Sensory Beginnings- Get it right from the start…

You should touch your baby even if they are born at 21 weeks.

The fragile preterm infant is suddenly born into an environment so different from their safe and secure world in the womb. The neonatal intensive care unit (NICU) is their first home. This artificial and over stimulating world of bright lights, loud sounds, unpleasant and painful touch, unpleasant smell and taste disorganizes these vulnerable babies at a time which is critical for neuro development, both in terms of structure as well as function. This blog focuses on the tiniest and most vulnerable babies, but it is applicable to all preterm infants in general.

Adaptations made in the NICU help balance the needs of giving critically ill babies the highly specialized medical care necessary for their survival while protecting them from the challenges of their new surroundings. This has led to the emergence of developmentally supportive care. It is based on the concept that one should create an environment as similar as possible to that of the womb. Such an environment provides care and support to these babies, helping them to organize their state of mind, reduce negative impact and have an optimal development of their brain.

Developmentally supportive care comprises of:

1. Protected sleep
2. Pain and stress assessment and management (NICU can use scoring system to assess pain and respond accordingly)
3. Containment (gently placing baby in flexed position)
4. Facilitated tucking (bringing body to middle)
5. Swaddling (wrapping the infant in such a way that movement is restricted)
6. Nesting (providing a boundary similar to that in the womb; thus the infant has a surface to touch)
7. Providing a healing environment (minimize sound and light)
8. Clustering activities
9. Kangaroo care/ Skin to skin cuddles
10. Gentle positioning and skin care
11. Non-nutritive sucking
12. Scent cloth
13. Oral immune therapy
14. Involving family in all types of care

Flexion is the best position. If an infant in NICU is placed with all the limbs lying flat on the bed, it is not the best position or care.

You can look at their behavioral cues to understand how they react to different sensory inputs. Does she like stroking, or constant pressure or just a touch? Does she dislike a particular type of activity? Ensure that your hands are clean nails are washed, you are not using strong scents or lotions and that your hand is warm before touching your little one. Remember to always talk first, then touch, then move.

Once it is understood that the infant is in a state of optimal readiness try to engage gradually. A caring exchange is accepted well by an infant and can be measured by improvement in their sleep-wake cycle and normal vital signs. Occasionally there is an improvement in respiratory parameters, heart rate and blood pressure. Depending on a baby’s ability to sustain a mutual relationship, the developmentally supportive care provider (parent/nurse) can begin their caring. This is known as ‘cue based care’.

If a baby is alert and has normal vital signs, it would be ideal for interaction. Whereas a baby who has frequent alarms going off on the monitor, squirming uncomfortably or crying might not be ready for interaction but can be comforted by being spoken to or hand hugging. Thus, care can be modified based on an individual baby’s needs. Just like interacting with an adult, one needs to be a gentle man/ gentle woman with a preterm baby. Remember, never tap or knock the incubator. Open and close the side ports gently. Never place any item on top of the incubator. Doing so would expose your little one to very very loud sounds.

Hand hugs or resting your hand on their head and against their feet is very calming for a baby. Hand hugging can be performed in different situations.

Consider a trivial task like diaper change. While engaging in a developmentally supportive diaper change, consideration of light and sound levels within the immediate care area, positioning and comfort needs during the procedure, assessment of skin integrity and responses to handling, and whether or not the family wishes to participate in care should be always checked. To enable this care, single patient room concept has become popular in NICU. Although tremendous advances in neonatal care and the developmental support offered to high risk infants have been made, variability in practice remains a constant concern. The bedside nurse plays a vital role in determining the type and quality of developmentally supportive care offered to the infant.

A clay model of developmentally supportive care

The unit where I work, practices a beautiful concept of using a ‘scent cloth’. All mums who deliver extremely preterm neonates are given a small piece of sterile cloth to be placed on her bare skin. After a few hours that cloth is removed and placed in the vicinity of her infant in the incubator. This enables bonding of the tiny infants with their mum in a safe way. ‘Oral immune therapy’ is also a very important way to establish bonding and help enhance the successs rate of early feeding in extreme preterm infants. Very tiny amounts of expressed breast milk, as low as 0.2 to 0.5 ml is smeared on the infants lips or inserted into her oral cavity. This has proven to enhance short-term outcomes in tiny preterm infants.

Even in the very early days of life you should be allowed to touch your baby irrespective of their gestational age. Gentle foot massages can be a lovely parenting occupation. Especially because many of the sensory experiences to the feet are not pleasant in the NICU (Ex: pick, SpO2 probe application). Experiencing less pain is a real gain. Research shows that young adults with preterm birth history have differences in sensory processing compared to general population. You can read more about pain in NICU in my previous blog which was entirely dedicated to “Impact of early life pain”. There is also a blog on “Play and activity in the NICU” which you may find useful.

In the NICU, the neonatal team can support you based on your baby’s behaviour, medical status and development. Try skin to skin care with your infant for an hour or more every day. A 20 year follow-up of RCT shows larger volumes of total grey matter, basal nuclei and cerebellum in those who had received kangaroo mother care vs routine incubator care.

As your baby grows up, and transitions to lower level of support, an Occupational therapist can help you try breast feeding. Breastfeeding offers so many nutritional benefits, but it also creates the best sensory environment to love, learn and grow. And as you start your journey at home, remember to approach your baby from the middle. Being in the middle helps get hands to mouth, find a fist to suck on, feel comforted and look at you. The muscles in your baby’s face copy what you are doing. A parents face and voice is always the number one toy. Baby’s sensory needs are best met in the loving arms of parents. Smiles are everything. That look of love that little babies offer their mums and dads is called as ‘Primary Intersubjectivity’.

It is important for all NICUs to stop separating parents and babies. For preterm infants the single biggest influence on their neurodevelopmental outcomes are their parents. NICUs should always support families and never view a baby in isolation and this is the mantra of ‘Family centered care’.

You will gradually learn what your newborn is saying to you, because babies communicate with their behavior. Signs of sensitivity include yawning, sneezes and hiccoughs. If they experience too much sensory input they may need a moment to adjust. The ease with which parents hold a baby, shapes what love will feel like for that child for the rest of their life.

Have a lovely parenting experience you all..!

Impact of early life pain

Modern health care has brought innumerable benefits to newborn health. But at the same time, it has also introduced the experience of pain very early in life. It is now routine care for newborns to receive various injections or have blood drawn within 24 h of life.

For infants who are sick or premature, the pain experiences are frequent and often severe, with neonates requiring intensive care admission encountering approximately 14 painful procedures daily in the hospital. These invasive procedures range from repetitive heel sticks to minimally invasive or open surgeries, and these occur during a critical period of neurodevelopment when the nervous system is very vulnerable due to immaturity and neuroplasticity.

In recent decades, much of the world has experienced a continued increase in preterm births with an estimated 15 million babies born prematurely each year globally. Babies born at term spend 4.9 days in the neonatal intensive care unit (NICU). The average length of stay in the NICU for extremely preterm infants is 81 days, and can extend to more than 4 months at times.

One of the most frequently performed invasive procedures in the NICU is a heel stick, or heel lance/needle prick. This procedure is a pinprick puncture into the heel of a newborn used to obtain blood samples for screening laboratory tests, glucose levels, general chemistries, complete blood counts, and toxicology screening.

Generally, to obtain adequate amounts of blood for testing, the heel must be squeezed, which is more painful for newborns than venipunctures. Another painful procedure that may be required for newborns with significant respiratory compromise is endotracheal intubation, a procedure performed on both adults and infants that allows access to the airway to provide respiratory support via mechanical ventilation.

Adult patients report mechanical ventilation to be a source of pain, discomfort, and depression. As the procedural numbers rise, the likelihood of developing hypersensitivity and/or persistent pain at the site of damage (chronic post-surgical pain) increases within months following surgery.

Research shows that early life pain has significant long-term effects on neurosensory, cognition, behaviour and health outcomes that persist into childhood and even adulthood. As they cannot verbalise their pain experience and depend on others to recognise, assess and manage their pain, neonates may suffer immediate or long-term consequences of unrelieved pain.

A combination of factors, such as the underestimation of pain or concerns for potential adverse effects of pain killer meds, lead practitioners to withhold or inadequately dose these medications. There can be negative impact on psychosocial behaviours, varied behavioural pain responses and reorganization of pain processing when these babies grow up.

The treating team, especially the nurse can help reduce pain by:

1. Repositioning (positioning the neonate, appropriate to their gestational maturation, supporting limbs/ trunk)

2. Swaddling (neonates can be wrapped in a cloth or blanket, with their arms and legs tucked in, to make them feel secure)

3. Nesting (a positioning aid or roll that is placed around the neonate to help contain them and make them feel safe and secure by imitating a womb-like environment)

4. Facilitated tucking (holding a neonate so that their limbs are in close proximity to the trunk)

5. Containment holding (the caregiver can use two hands to hold the baby and make them feel secure)

6. Decreasing environmental sensors (noise/ light)

7. Tactile soothing (still gentle touch can be provided by caregivers placing their hand on the neonate’s head and abdomen/back).

Parents can help reduce pain by performing non-nutritive sucking (use of a dummy to promote sucking without breast milk or infant formula), breast feeding as appropriate, allowing neonate to grasp a finger, skin to skin care for the newborn (Kangaroo Care) and talking to their baby.

Clustering, developmental or cue based care can significantly contribute in reducing pain and promoting intact neurodevelopment. It is the practise of grouping care to minimise the number of times a neonate is handled. By reducing episodes of handling, periods of sleep can be protected and stress can be minimised. If neonates are displaying signs of stress (such as increased heart rate or facial expression), fewer procedures can be clustered on the next occasion and comfort measures can be provided.

High level of clinical acuity and good decision making plays an important role in reducing the number of times a newborn is sampled for blood, or is intubated. Talk to your treating team about this and help develop a less painful NICU experience in every sense.

Teratogenicity

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Effect of exposure to toxins before birth

‘Those who do not read history are doomed to repeat it’. This statement holds true for medicine and its evolution into the modern science that we know of today. From time immemorial birth defects have been attributed to something happening to the mother while she is pregnant. Natural events like eclipses, meteor shower, orientation of the stars and even the new moon were blamed for birth defects. It is important to know that in every pregnancy, a woman starts out with a 3-5% chance of having a baby with a birth defect, which is known as the ‘background risk’. In this blog we will be speaking about various birth deformities that result due to a known toxin. This is not an exhaustive list, but I have tried to include the most important teratogenic effects.

A ‘teratogen’ is any agent that reaches the developing embryo or fetus through the mother and is capable of causing, directly or indirectly, birth defects or functional alterations of the fetus or the child after birth. It can be a chemical or a microorganism.

History:

Thalidomide tragedy: Thalidomide first entered the market in 1957 as an over-the-counter remedy for nausea or vomiting. It was also prescribed to pregnant women for morning sickness. By 1960, thalidomide was marketed in 46 countries, with sales nearly matching those of aspirin. In 1961, an Australian obstetrician Dr. William McBride began to associate this so-called harmless compound with severe birth defects in the babies he delivered. The drug interfered with the babies’ normal development, causing many of them to be born with ‘phocomelia’, resulting in shortened, absent, or flipper-like limbs. A German newspaper soon reported 161 babies were adversely affected by thalidomide. By March of 1962, the drug was banned in most countries.

Diethylstilbesterol: Exposure of the human fetus to a synthetic estrogen called diethylstilbestrol (“DES”) led to clear cell adenocarcinoma of the vagina and cervix. These estrogens are now known to be mild carcinogens (cancer causing) and potent teratogens. The result of exposure to daughters also included anomalies of the genital tract that are associated with adverse outcomes of pregnancy and changes in vaginal lining cell layer. Among sons exposed to DES, no increase in the incidence of any cancer has been reported, but several anomalies of the genital tract have been described, and possibly modification of some social behaviours. 

Effects of Hiroshima Nagasaki bombing: Outcome of pregnancies of mothers who were within 2,000 metres of the hypocentre was investigated. In mothers who demonstrated signs of radiation sickness compared to mothers who did not develop such findings there was a significant increase in miscarriage, stillbirth and death during infancy (43 percent) and some of their children had an abnormally shaped small head who were impaired intellectually. The severity was related to the radiation dose.

Effects of Bhopal gas tragedy: Exposure of pregnant women to toxic gases in Bhopal in 1984 resulted in high pregnancy loss, increased first 5-year mortality and delayed development. Out of every three children born to women who were pregnant on the night of the disaster, only one survived.

After knowing a bit of history, let us now look at what is the vulnerable period of pregnancy when a fetus can be affected by exposure to a teratogen, and the various known teratogens.

Vulnerable period of pregnancy: Period of organogenesis.

It is suggested that women who wish to become pregnant should withdraw all unnecessary medications 3-6 months before conception. The fetus is highly vulnerable to birth defects between 3^rd week and 8th week after fertilization; which is the period of organogenesis. All major organs start developing during this period. Drugs reaching the fetus during this stage may cause a miscarriage, an obvious birth defect, or is noticed later in life.

Exposure to X-ray:  Accidental or intentional exposure above regulatory limits may be cause for concern. Although radiation doses to a fetus tend to be lower than the dose to the mother, due to protection from the uterus and surrounding tissues, the human embryo and fetus are sensitive to ionizing radiation at doses greater than 0.1 gray (Gy). Depending on the stage of fetal development, the health consequences of exposure at doses greater than 0.5 Gy can be severe, even if such a dose is too low to cause an immediate effect for the mother. The health consequences can include growth restriction, malformations, impaired brain function, and cancer

Exposure to chemotherapy agents: Chemotherapeutic agents inherently are designed to destroy cells. Many of them act by attacking the DNA of the cell. Therefore, exposure to such agents significantly increases the risk of birth defects. For example, exposure to Methotrexare results in facial and limb deformities. If under unfortunate circumstances where a pregnant women is also dealing with a cancer, expert opinion and multidisciplinary care is strongly advised to prevent anomalies in the baby and help the fetus reach a viable age before delivery.

Fetal alcohol syndrome: Exposure to alcohol in the 1^st trimester affects the proper development of organs and of the head and face. Continuous use of alcohol by the mother results in low birth weight. Stopping alcohol intake at any time during pregnancy is likely to be beneficial on developing brain.

Fetal hydantoin syndrome: Phenytoin is an anti-seizure drug used to treat epilepsy. Exposure to Phenytoin during pregnancy may result in Fetal hydantoin syndrome characterized by decreased growth, developmental delay, craniofacial anomalies like cleft lip and palate, skeletal anomalies and hernias. Some pregnant women who consume Valproic acid for treatment of epilepsy may have a baby with Fetal Valproate syndrome. Symptoms of this condition may include neural tube defects such as spina bifida, distinctive facial features, congenital heart defects and other musculoskeletal abnormalities.

Retinoic Acid Embryopathy: Isotretinoin is a conpound which is derived from Vitamin A, and is given for the treatment of severe cystic acne. A wide spectrum of birth defects including craniofacial, heart, and nervous system malformations have been described with exposure to this drug during pregnancy. Application of Vitamin A derivatives on skin can also lead to teratogenicity as it is absorbed into the body.

Lithium exposure: Lithium is used in the treatment of psychiatric conditions. A recognized teratogenic effect of Lithium exposure during pregnancy is Ebsteins anomaly where there is massive enlargement of one of the chambers of the heart due to poor development of the tricuspid valve.

Lead exposure: If a woman has been exposed to lead over a long time or has had high levels of lead in her blood in the past, the lead stored in her bones can be released into the blood during pregnancy. Increased levels of lead in the blood during pregnancy can increase risk for miscarriage, cause the baby to be born too early or too small, affect the baby’s brain, kidneys, and nervous system, cause the child to have learning or behavior problems.

Exposure to cigarette smoke: Nicotine has vasoconstrictor properties (decreses the size of blood vessels and hence decreases blood flow through that vessel). In utero exposure to cigarette smoke leads to low birth weight, shorter length, smaller head circumference and adverse neurodevelopmental outcome.

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Diabetic Embryopathy: Uncontrolled diabetes can cause a unique anomaly called as caudal regression syndrome or sacral agenesis. There is also an increased susceptibility to neural tube defects such as spina bifida. Infant of diabetic mother can have abnormal thickening of heart muscles and its resultant problems with blood flow. Adequate antenatal care and good control of blood glucose can prevent diabetic embryopathy.

Drug safety: Pregnancy can be an exciting time. However, this time can also make you feel uneasy and prompt you to take medicines. Not all medicines are safe to take when you are pregnant. Even headache or pain medicine may not be safe especially during the first 3 months (that is when a baby’s organs form). If you are planning a pregnancy, talk to your doctor about any medicines you are taking, including over-the-counter ones. Do not trust that a product is safe just because it says “natural” or herbal.

If one is careful and is monitored well by a specialist obstetrician during pregnancy, the chances of teratogenicity decreases drastically. Unwarranted use of medicines even on skin (ex: Vitamin A cream) can lead to irreversible damage to the developing fetus.

Newborn blood transfusions

Sick babies do need a lot of blood products..!

One may wonder, how different is neonatal blood transfusion from transfusion in the pediatric or adult age group? The answer is, it is almost the same. However the underlying conditions requiring the transfusion may be different. This blog describes briefly about the various aspects of blood transfusion in the Neonatal Intensive Care Unit(NICU).

Photo from internet

A blood transfusion is the process of transferring blood or one of its components from one person to another. Blood is made of fluid called plasma and three types of blood cells called as red cells, white cells and platelets. Each part of blood has a special function and can be individually transfused. The utility of white blood transfusion is scarce and hence will not be discussed here.

The blood volume of a full-term infant is approximately 85 ml per kg and that of a preterm infant is approximately 100 ml per kg (A 1.5 kilo baby will have around 150 ml of blood in her body). A blood loss of as little as 20 ml may result in low blood pressure and its related adverse consequences. The most frequent indications for blood transfusion in the newborn are the emergency treatment of blood loss during a complicated birth process (mum and baby both lose blood in such scenarios) and the recurrent correction of anemia of prematurity. Platelet transfusions also occur fairly frequently in sick neonates, so do plasma and cryoprecipitate transfusions.

Different components of blood that can be transfused:

Red blood cells

Red blood cells (RBC) are the part of the blood that carries oxygen from the lungs to all other parts of the body. A certain number of these cells are needed for the body to function. The condition in which RBCs are less in number is called as ANEMIA. Red blood cell transfusion provides an immediate increase in oxygen delivery to tissues and is an effective and rapid intervention to treat significant anemia.

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Platelets

Platelets are the part of the blood that helps control bleeding by forming blood clots. A platelet transfusion may be needed before an invasive procedure, such as lumbar puncture or a major surgery, that can cause a baby with a low platelet count to bleed. Preterm neonates have an increased bleeding tendency and, in particular, have a higher risk of intracranial hemorrhage, and therefore need platelet transfusions more frequently.

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Plasma

Plasma is the fluid in blood that carries the blood cells throughout the body. It contains proteins that help the blood clot, as well as vitamins and minerals. A plasma transfusion may be needed when a baby lacks the parts of the blood that help it clot. Plasma is stored in a frozen form immediately after collection from a donor and its separation from red blood cells. It is therefore called as Fresh Frozen Plasma (FFP). The most common reason for transfusion of plasma in a neonate is the correction of bleeding due to multiple acquired coagulation factor deficiencies.

Photo from internet

Cryoprecipitate

Cryoprecipitate is a type of plasma which is particularly used for bleeding caused due to low fibrinogen levels. Low fibrinogen can be either inherited or secondary to severe sepsis or liver dysfunction. Cryoprecipitate may also be indicated in neonatal cardiac surgery and major haemorrhage.

Conditions requiring red blood cell transfusion soon after birth:

Blood loss from placenta:

Severe blood loss at birth can occur with various birth related complications, such as low lying placenta (placenta previa), separation of placenta before birth (placental abruption), incision or tearing of the placenta during cesarean delivery, and traumatic tearing or rupture of umbilical cord (umbilical cord evulsion). Neonates who are severely anemic at birth can have signs of brain damage due to inadequate oxygen supply to the brain.

Birth injury:

Massive bleeding into the scalp (subgaleal space) is seen most commonly with difficult deliveries requiring vacuum or forceps assistance. Subgaleal hemorrhages are potentially life threatening and must be recognized as early as possible. Frequently, babies may develop low blood pressure and anemia requiring NICU care and blood transfusion.

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Twin pregnancy:

Twin–twin transfusion is a complication of twin gestations who share a single placenta, occurring in 5%–30% of such pregnancies. It involves placental connections that permit transfer of blood from one twin to the other. As a result, one twin will be born anemic, while another will have excess blood. The anemic twin will usually require RBC transfusion soon after birth.

Vitamin K deficiency bleeding (VKDB):

Vitamin K is necessary for the production of clotting factors in the body. Deficiency of Vitamin K results in intracranial bleeds that endanger life. VKDB was rampant before Vitamin K injection was made compulsory for all newborn babies.

Hemolytic anemia:

Destruction of RBCs of an unborn baby may occur if mum has a different blood group than baby’s. This condition is seen if mum has a Rh negative blood group and baby has a Rh positive blood group. Severe anemia and jaundice can result due to this condition, leading to brain damage. Immediate replacement of baby’s blood is performed to prevent brain damage. This process is known as exchange transfusion. This is one of the few conditions requiring large quantities of blood product transfusion in the neonatal period. Other situations requiring massive transfusions are ECMO and cardiac surgery.

Destruction of RBCs us also common if mum’s blood group is O positive and baby’s is A positive or B positive. Other conditions like spherocytosis can also cause hemolytic anemia but will not be discussed in detail in this blog.

As noted, the first few hours of life is the most susceptible time during which baby might require transfusion of blood products for life threatening hemorrhage/ anemia.

“All birthing centres must be supported by transfusion services prepared to issue O-negative blood in a birth emergency”

Risks associated with transfusion:

Despite recent advances in screening and pathogen inactivation, RBC transfusion is the transplantation of active tissue and cannot be entirely risk free.

The risks of transfusion are:

1. Transfusion-transmitted infections (viral, bacterial, parasitical or prional)
2. The adverse effects of white blood cells (graft-versus-host disease; transfusion-related acute lung injury etc)
3. Fluid or electrolyte( sodium, potassium) disturbances
4. Blood group incompatibilities (often mistransfusion errors)

Measures taken to decrease risks associated with transfusion:

Blood used at most hospitals comes from volunteer donors. Before being accepted as a donor, each volunteer must provide their medical history and undergo a physical examination. The collected blood is subjected to rigorous screening to detect infectious agents.

For newborn transfusion, there are specific considerations for blood-banking procedures. All transfusion-transmitted infections put the newborn at risk, but cytomegalovirus (CMV) infection may have serious consequences for more immature infants. The risk of CMV infection is reduced by a process called as leukoreduction (removal of white blood cells from blood components). Most centres gamma (γ)-irradiate blood to deactivate white blood cells and prevent graft versus-host disease, which is rare in newborn infants. Hemolytic transfusion reactions due to mismatched blood are rare in the newborn. Transfusion-related acute lung injury and Transfusion associated necrotizing enterocolitis are also rare but under investigation.

INTRAUTERINE TRANSFUSIONS (IUT):

Transfusing blood products to an unborn baby in mum’s womb is called as Intrauterine transfusion. IUTs are only undertaken in specialized fetal medicine units with the requisite interventional skills and expertise. Such centres are defined as those performing at least 15 procedures per year, with a minimum of two specialists. Although technically challenging, fetal blood sampling and IUTs can be performed as early as 16 weeks gestation. Complications include miscarriage/preterm labour, umbilical vessel spasm, bleeding from the puncture site and fetal death.

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Delayed cord clamping:

Delayed clamping of the umbilical cord at birth, for 60 to 90 seconds, is a safe and effective means of decreasing the occurrence of anemia in all neonates. A delay of 60 seconds can result in improved iron status and lesser transfusions. Delayed cord clamping is now a standard of care. The decision to avoid delayed cord clamping should not be taken without discussion with a Neonatologist.

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Overall, it is always important to know the reason for blood product transfusion in neonates (beyond knowing its anemia or poor clotting).

I hope this blog gives a comprehensive idea around transfusion in neonates. If there are any questions feel free to comment below.

Ten little fingers, ten little toes

Ten little fingers, ten little toes

A very famous lullaby describes a baby’s body with normal features. While having something different might be part of a normal body, many times it is not. This blog describes the variations found in the hands and feet of a baby, and the associated anomalies within the body. Once again, it is not an exhaustive list. There are different names given to these conditions, and they are mentioned in brackets. A brief description is followed by the names of various associated syndromes.

More number of fingers/ toes (Polydactyly):

Having more number of digits is one of the most common type of congenital variation. They are mainly divided into 2 types. In the Pre- axial type, the extra digit is close to the thumb, and in the Post- axial type, the extra digit is close to the little finger. Pre- axial type is more likely to be associated with other anomalies compared to Post-axial type. In many cases, the extra digit is connected to the hand by a skin tag alone. Nonetheless, it is considered to be polydactyly. Fortunately, such digits are easy to treat compared to those which have a bony connection.

The associated syndromes are: Short rib-polydactyly syndrome, Aplasia cutis congenita, Jeune syndrome, CHARGE association, Chondrodysplasia Punctata, Dandy Walker Malformation, 22q11.2 Deletion syndromes, Diabetic Embryopathy, Dysmelia (limb reduction), Ellis-van Creveld syndrome, Epidermolytic conditions, Fanconi anemia, Fetal akinesia sequence, Cryptophthalmos syndrome, Frontonasal dysplasia, Holoprosencephaly, Hypoglossia-Hypodactylia syndrome, Hypomelanosis of Ito, Meckel-Gruber syndrome, Mobius syndrome, Mermaid baby, Smith-Lemli-Opitz Syndrome, Thanatophoric Dysplasia, Trisomy 13, VACTERAL association.

Less than ten fingers/ toes (Oligodactyly):

Having lesser number of digits is far less common than having more digits. As long as a normal thumb is present, having lesser number of fingers hardly causes a problem. Having lesser toes, in presence of a normal great toe, does not result in any abnormal gait or posture.

The associated syndromes are: Dysmelia (limb reduction), Hypoglossia-Hypodactylia syndrome, Acardia, Cri-du-chat syndrome, Cornelia De Lange Syndrome, Pierre Robin Sequence, Roberts syndrome, TAR syndrome.

Fingers/ toes that are joined together (Syndactyly):

Joint digits are quite uncommon. The joining medium is usually skin and soft tissue. Very rarely, the bone splits into two branches to produce a polydactyly-syndactyly complex. Many syndromes which are associated with syndactyly also have accompanying polydactyly.

The associated syndromes are: Aplasia Cutis Congenita, Dandy Walker malformation, 22q11.2 Deletion syndromes, Epidermolytic condition, Fetal Akinesia sequence, Cryptophthalmos syndrome, Frontonasal Dysplasia, Hypoglossia-Hypodactylia syndrome, Hypomelanosis of Ito, Mobius syndrome, Acardia, Adams-Oliver syndrome, Amniotic Band syndrome, Apert syndrome, Arthrogryposis Multiplex Congenita, Cri-du-chat syndrome, Cornelia De Lange Syndrome, Diabetic Embryopathy, Dysmelia (limb reduction), Split hand/foot malformation, Fanconi anemia, Hallermann-Streiff syndrome, Holt-Oram syndrome, LEOPARD syndrome,  Meckel-Gruber syndrome, Neurofibromatosis, Oblique Facial Cleft syndrome, Retinoid Embryopathy, Robinow syndrome, Short rib-Polydactyly syndrome, Russell-Silver syndrome, Smith-Lemli-Opitz Syndrome, Sotos syndrome, Thanatophoric Dysplasia, TAR syndrome, Triploidy, Trisomy 18, VACTERAL association, Waardenburg syndrome.

Short fingers/ toes (Brachydactyly):

Having short fingers and toes could be constitutional i.e., familial or due to short stature. It hardly causes any functional difficulty and usually does not require any treatment.

The associated syndromes are: Achondroplasia, Hypomelanosis of Ito, Mobius syndrome, Adams-Oliver syndrome, Short rib-polydactyly syndrome, Aplasia syndromes, Amniotic Band syndromes, Apert syndrome, Campomelic dysplasia, Cleidocranial dysplasia, Cornelia De Lange Syndrome, Holt-Oram syndrome, Hypochondroplasia, Noonan syndrome, Short-limbed dwarfism, Robinow syndrome, Russell-silver syndromes.

Long fingers/ toes (Arachnodactyly):

Having long digits is desirable, but when they are abnormally long with associated tall stature and hyperflexibility, one should think about Marfan’s syndrome. Marfan’s is usually associated with problems with vision and heart disease.

The associated syndromes are: Marfan syndrome, Arthrogryposis Multiplex Congenita.

Curved pinky (Clinodactyly):

In curved pinky, is a very important indicator of chromosomal abnormality. It can occasionally be a normal variant. Hence, in the absence of other suggestive features, there is no need to investigate further. The most common association is Down syndrome. This syndrome is associated with hear defects, flat facial appearance, broad nasal bridge, single crease on palms and a wide gap between the great toe and the second toe.

The associated syndromes are: Frontonasal Dysplasia, Hypomelanosis of Ito, Mobius syndrome, Campomelic Dysplasia, Cleidocranial Dysplasia, Cri-du-chat syndrome, Cornelia De Lange Syndrome, Down syndrome, Ellis-van Creveld syndrome, Fanconi anemia, Fetal Alcohol syndrome, Holt-Oram syndrome, Kabuki syndrome, Klinefelter syndrome, Miller-Dieker syndrome, Mobius syndrome, Robinow syndrome, Rubinstein-Taybi syndrome, Seckel syndrome, Russel-Silver syndrome, TAR syndrome, Triploidy, Trisomy 13 syndrome, Trisomy 18, Williams syndrome, Alagille syndrome.

Abnormalities in palms and soles:

This is a broad category. The abnormalities can be in the form of different looking Palmar creases and different looking lines on the soles. Occasionally the arches of the foot may be different.

The associated syndromes are: Ehlers-Danlos syndrome, Epidermolysis, Fanconi anemia, Fetal-Hydantoin syndrome, Hereditary Hemochromatosis, CHARGE association, Down syndrome, Meckel-Gruber syndrome, Rubinstein Taybi syndrome, Russel-Silver syndrome, Smith-Lemli-Opitz Syndrome, Triploidy, Wolf-Hirschhorn syndrome, Alagille syndrome, Cutis laxa , Cri-du-chat, Cornelia De Lange Syndrome.

Amputated fingers/ toes:

The associated syndrome is called as: Amniotic band syndrome. The fibrous bands within the Amniotic fluid restrict the movements of limbs of the fetus and may be sharp enough to amputate the digits or a limb within the womb.

Treatment: Cosmetic repair can be performed by a plastic surgeon or a pediatric surgeon. Movements can be improved by physiotherapy and occupational therapy. Major defects can be managed by prosthesis. However, the most important factor determining the overall outcome is the underlying syndromic diagnosis.

There are many people in this world with many types of abnormal looking digits. But, if the abnormality runs in the family, it is less likely to be problematic.

COVID-19 and baby

FAQ based approach

COVID-19 pandemic has brought about a huge change in our day to day habits. We are now more particular in cleaning our hands, and the surfaces we use. Proper cough etiquette and hygienic disposal of used tissues are some desirable practices to help prevent the spread of COVID-19, and should continue even after the pandemic is over.

We now have enough data on COVID-19 and its manifestations in the newborn period and during infancy. This blog is a brief description of the signs and symptoms of COVID-19 disease, its transmission and its possible effects on the developing fetus.

How can a baby get infected with Corona virus?: The main source of infection for a baby is usually an adult who is carrying the COVID-19 virus in his/her oral and nasal secretions. Droplet mode of transmission is most common, followed by transmission due to shared items such as towel, soap, spoons and utensils. Make sure to avoid visitors at home. Friends and family can shower love through virtual platforms. If a family member is affected, they should be isolated in every sense. Vaccines offer hope to adults, but it depends on which vaccine was administered. Those which offer >90% protection are obviously dependable.

What if mum is infected with Corona virus?: Mothers being investigated for or found to be positive with COVID-19 infection should not be separated from their infants. The primary concern is that the virus will be transmitted from mother to infant through respiratory droplets during breastfeeding. To prevent this, mum can practice skin-to-skin care and breastfeed, with some modifications. Among these precautions, practicing meticulous hand hygiene, wearing a mask when within 2 metres of their infant, and practicing hand hygiene before and after skin-to-skin contact, breastfeeding, and routine infant care are the most important ones.

Importantly, when mother’s breast feed, her antibodies to SARS-CoV-2 are likely passed to the newborn and may offer protection. When the mother has recently coughed or sneezed with chest exposed, she should cleanse the breast area with soap and water before feeding, as an added precaution. Mothers may also choose to pump—ensuring that they wash their hands, and clean all equipment—and feed the expressed milk by spoon or any method of their choice. At home, frequently touched household surfaces should be disinfected regularly.

What if a mother is too ill to breastfeed? If due to COVID-19 or other causes, mum is very ill, she should be encouraged and supported to express milk. Milk expression should ideally start within 3 hours of delivery and be performed atleast every 3 hourly. Hand expression can be started on day one , followed by pump to enable better milk output. Excess milk can be stored in a refrigerator or can be freezed, to use later.

What if infant has breathing difficulty? According to the available literature, an infant presenting with breathing difficulty at or within minutes of birth is most likely to be experiencing a non-COVID-19-related illness.

The most important signs to watch:

1. Inactive baby, not playing as usual

2. Very irritable baby crying excessively

3. Cough and difficulty in breathing

4. Running nose with nose block. Red and watery eyes

5. Unable to feed. Not waking up to feed

6. Fever

7. Decreased urine production

8. Swelling of abdomen

9. Vomiting and loose stools

10. Abnormal body movements

In general, these symptoms are common to many conditions during infancy and newborn period. It is important to consult a Pediatrician at the earliest and avoid self medication. Even if it is not COVID, these symptoms warrant investigation and treatment with possible hospital admission.

What is the evidence available? In a large case series conducted in China of 2143 paediatric patients infected horizontally with COVID-19, symptoms may present as mild or moderate in up to 94.4% of newborns. Fever and cough are the most common signs. A recent U.S. study of 18 infants >90 days old who tested positive for SARS-CoV-2 found that all had only a mild febrile illness. Such studies provide some reassurance that even in the context of transmission, illness severity in infants is typically mild. While mum to baby transmission of SARS-COV-2 during pregnancy or delivery is rare, it remains a risk, particularly when mothers are severely ill or immunosuppressed.

The need for obtaining reliable information cannot be over emphasized. Please look at reliable sources like WHO or CDC for updated numbers and evidence regarding COVID-19.

What is the risk for mum to baby transmission before birth? :This type of transmission called as vertical transmission is exceptionally low. Transmission from a Normal birth is also exceedingly unlikely. Although there have been reports of amniotic fluid and placental surfaces yielding positive tests for SARS-CoV-2, the rate of transmission following C-section has also been low.

One feature that all reported cases of vertical transmission have in common is that mothers were symptomatic with viral pneumonia at time of delivery, with presentations ranging from fever and breathing difficulty to pneumonia on X-ray. Based on hundreds of documented outcomes for newborns born to mothers with COVID-19 in the literature, the risk for vertical transmission of infection is considered low, but not nil.

The million dollar question is: What effect will coronavirus have on my baby if I am diagnosed with the infection?

Current evidence suggests that if you have the virus it is unlikely to cause problems with your baby’s development, and there have been no reports of this so far. There is also no evidence to suggest that coronavirus infection in early pregnancy increases the chance of a miscarriage.

What is the risk of delivering prematurely? : Across the world, reports suggest some babies have been born prematurely to women who were very unwell with coronavirus. It is unclear whether coronavirus caused these premature births, or whether it was recommended that their babies were born early for the benefit of the women’s health and to enable them to recover.

CONCLUSION: Whether or not a newborn baby gets COVID-19 is not affected by mode of birth, feeding choice or whether the woman and baby stay together. It is important to emphasise that in most of the reported cases of newborn babies developing coronavirus very soon after birth, the babies remained well.

All in the eyes- Part 2

The second part of this series of blogs discusses ophthalmological problems in infants, other than retinopathy of prematurity, which was described in detail in the first part of the blog. This is in no way an exhaustive list. This blog intends to increase awareness about the common eye disorders and the importance of early screening.  Early visual experience drives the architecture of the visual brain. Therefore it is extremely important to diagnose and treat disorders of the eye at a very early age.

Screening eye examinations are important in all infants, regardless of whether they are born full term or a pre term. All neonates should have an examination of the red reflex before discharge from the hospital. Blink response to light confirms the presence of light perception. Most commonly, visual function in a newborn is assessed by detection of light aversion. A bright light is shone into each eye or even through the thin eyelids to elicit closing or squeezing of the lids.

Leukocoria or Abnormal Red Reflex: Red reflex is the reflection of retina visible when a light is flashed towards the eyes. It is commonly seen when a flash is used while taking a photograph. The Pediatrician will use a hand-held ophthalmoscope to elicit the red reflex. Abnormal red reflex can be caused by vision- and life-threatening conditions, and it requires urgent ophthalmologic evaluation. These conditions include cataract, retinoblastoma, retinal detachment, vitreous hemorrhage, Retinopathy of Prematurity, persistent fetal vasculature, uveitis etc.

Cataract: A cataract is any opacification of the normally clear lens of the eye. It is still responsible for approximately 10% of childhood blindness worldwide. Causes of Cataract can be due to intra uterine infections, metabolic diseases like galactosemia, or genetic conditions. Successful treatment of congenital cataracts is highly dependent on early diagnosis and prompt referral. Treatment is surgical removal of the opaque lens and placing an artificial lens. Useful vision can be restored if the surgery is completed within the first 6 weeks after birth. Beyond this time, visual restoration becomes progressively more difficult because of irreversible deprivation amblyopia. Amblyopia is described in detail later in this blog.

Retinoblastoma: It is the most common ocular cancer of childhood and accounts for 3% of all childhood cancers . The successful management of retinoblastoma depends on the ability to detect the disease while it is still restrictedinside the eyeball; and this presents in the form of absent red reflex.

Retinoblastoma can affect both eyes and the disease stage correlates with delay in diagnosis. Siblings of the affected baby are also at risk of retinoblastoma, as they may share the same genetic mutation.

Treatment of retinoblastoma is a combination of chemotherapy, radiotherapy and surgery. However, salvaging the eye is possible only when detected early.

Conjunctivitis: Neonatal conjunctivitis (conjunctivitis occurring within the first 4 weeks of life) is an inflammation of the surface or covering of the eye that presents with eye discharge and redness. It is the most common eye disease in neonates. Cause can be chemical, bacterial, or viral. Blocked tear ducts can get infected and result in conjunctivitis.

In the absence of redness, eye discharge do not need treatment. The discharge can be cleaned with a sterile cotton dipped in normal saline. The cleaning can be done 3-4 times a day. If the eye is sore, a check-up is necessary, because the extent of inflammation will dictate the type and duration of therapy. Red flag signs are fever, swelling of eye lids and pus like discharge from the eyes. It is important to consult early to prevent  the progression of any serious orbital infection which can extend to the brain very quickly.

Congenital naso-lacrimal duct obstruction: This condition affects 6% to 20% of infants and it occurs more commonly in preterm infants when compared to full-term infants. The symptoms are persistent tearing and a sticky discharge in the inner corner of the eye. Massaging the inside corner of the eye over the tear sac, in a downward motion with expression toward the nose, can exert hydrostatic pressure on the lower end of the lacrimal duct and may help to open any obstruction and establish patency. The massage method involves 5 to 10 strokes 4 times a day.

Glaucoma: Glaucoma is a condition of the eye which is associated with raised pressure within the eye and requires prompt intervention. Vision loss from glaucoma is typically irreversible. It presents in the form of an enlarged eye. An enlarged eye is suspected when the corneal diameter exceeds 11.0 mm in a term new-born.

Coloboma: It is a condition of the eye where a segment of the eye structures are absent. It can affect the eye lids, the iris, the choroid (blood vessel containing part of the eye), retina and optic nerve. It can result in severe visual defects. Usually it cannot be treated but cosmetic surgeries are performed to prevent stigma.

Corneal clouding: Opacification of cornea can be congenital or can develop in the first few weeks of life. The most important cause to consider is Glaucoma. Many hereditary conditions also cause corneal clouding. Birth trauma due to forceps or physical agents like nails, chemicals like surma/kajal can result in opacification of the cornea. Usually this requires corneal transplant and it is important to detect early.

Retinal hemorrhage: Bleeding within the retina after the birth process is very common. The incidence is estimated to be between 10% and 40% of all newborns. Small retinal bleeds get reabsorbed quickly. Large retinal bleeds are rare and may indicate some underlying disorder.

After the neonatal period: The absence of visual responsiveness by 2 months of age should prompt an urgent ophthalmologic evaluation. In most babies the cause of poor vision is obvious after complete eye examination. Some infants have intermittent squinting of eyes in the newborn period, and this is normal. Most full-term infants establish normal eye alignment within the first 2 months. Therefore, the persistence of a squint beyond the first 3 months of life warrants a complete eye examination by an ophthalmologist with pediatric experience.

Amblyopia/Lazy eye: Amblyopia is maldevelopment of the visual centers of the brain as a result of abnormal visual experience early in life. Amblyopia generally develops from birth to age 7 years. Lazy eye develops because of abnormal visual experience early in life that changes the nerve pathways between the retina and brain. The weaker eye receives fever visual signals. Eventually, the eyes’ ability to work together decreases, and the brain suppresses or ignores input from the weaker eye. One of the most common causes of ‘Lazy Eye’ is high refractive error in the affected eye. The treatment for this is use of optical correction (glasses or contact lens), and patching the good eye. This will encourage the usage of the suppressed part of brain, because the defective eye is forced to focus on objects and signals are transferred to the previously suppressed part of brain. Eye patch use might be necessary for a few months before it is discontinued. However, if the cause of amblyopia is cataract or corneal opacity, treatment of the primary cause should preceede the patch therapy.

If untreated, Lazy Eye can become functionally blind due to lack of stimulation. Hence it is very important to detect amblyopia early. In infants, it can present like a squint which is apparent or manifest when the child tries to focus on an object. The weaker or lazy eye often wanders inward or outward. The child can have abnormal posture or head tilting in an attempt to achieve better vision, as they suffer from poor depth perception. He or she can have a tendency to bump into objects on one side.

The American Optometric Association recommends that children have a thorough vision screening before 6 months of age and again before they are 3 years old.

Always remember- EARLIER IS BETTER.

Let’s aim to prevent a hazy future for all kids.

All in the eyes- Part 1

The first part of this series of blogs, about the health of the eyes of a newborn baby, will focus on preterm neonates. The second part will discuss about full term newborn babies, and it is yet to be published.

As a parent, everyone wants to ensure a secure future for their baby. A future, where he/she can be independent and perform all activities without any difficulty. Visual deficits are more commonly associated with very preterm birth than with a full term birth. More often than not, prematurity and NICU stay have an impact on the proper development of the eyes, and this puts a baby’s vision in jeopardy. A normal vision is probably the most important determining factor for a productive life. A minor deficit, even in a single eye, can adversely affect one’s performance drastically.

The problems in preterm neonates include: reduced visual acuity, higher rates of strabismus, presence of high refractive errors (myopia), lowered stereoacuity, and loss of peripheral vision. Damage to the retina from Retinopathy of Prematurity (ROP) is a common effect of very preterm birth. In addition, preterm birth can affect the development of brain structures that are involved in post-retinal processing of visual information such as the optic nerves, optic radiations and the areas of the brain responsible for processing normal vision.

Embryology of the eye:

The appearance of optic grooves from the developing brain marks the first sign of eye development at week three of gestation. At four weeks, the optic vesicle invaginates and creates the optic cup, which becomes the retina. Development of the choroid, a vascular layer that supplies the outer retina, begins during the 6-7 weeks. At week 12, capillaries are visible tracing the retinal pigment epithelium. By week 22, arteries and veins resembling the adult eye are apparent.

At approximately week six of gestation the eyelids begin to form. The lids remained fused, separating between the fifth and seventh months of development.

The delicate development of the eye is sensitive to embryologic errors.  Some examples of congenital eye malformations include anophthalmia (absent eyes), coloboma (defect in a portion of eye), cyclopia (single eye), cataract (opaque lens), aniridia (absent iris), detached retina, hyaloid artery persistence, aphakia (absent lens), and cryptophthalmos (hidden eye). 

How clearly can they see?

In the first 2 months after birth, the visual acuity is no better than 20/400 (can see an object at 20 feet while other people can see it at 400 feet). Both monocular and binocular visual acuities are worse in premature infants than in full-term infants at the same age. Poor visual acuity in premature infants can be attributed mainly to immaturity of the visual system.

Retinopathy of Prematurity (ROP):

By far, the most common disease affecting the preterm eye is ROP. With the advancement of medical technology, more and more lives are being saved and very tiny babies now survive. However, they are very sick and require supplemental oxygen, ventilator support, antibiotic coverage for infections, parenteral nutrition, placement of various devices like central lines, arterial lines etc; and they spend a considerable amount of time in the NICU before they are ready for discharge. Thus, the screening, diagnosis and treatment of ROP starts in the NICU and is continued after discharge.

Currently, there are no interventions that can prevent the development of severe ROP in very low birth weight infants. Large natural history studies have shown that, in most cases, ROP begins at 31 to 33 weeks of corrected age, with progression during the next 2 to 5 weeks. Overall, approximately 65% of infants weighing <1251 g develop some form of ROP.

The process of development of ROP is complicated. The peripheral retina gets its blood supply  only near full term; therefore, when an infant is born preterm, areas of the peripheral retina do not have blood supply. After birth, the baby is exposed to a relatively high oxygenated environment compared to in utero and this decreases the production of a chemical factor responsible for growth of blood vessels (vascular endothelial growth factor-VEGF) and halts the growth of the blood vessels in the peripheral retina. As the retina becomes more metabolically active after around 31 weeks of corrected gestational age, the existing blood vessels cannot meet the oxygen demands, which upregulates VEGF production in the retina, resulting in uncontrolled proliferation of blood vessels. A series of changes result in fine blood vessels extending into the vitreous, fluid collection in retina, retinal haemorrhages, fibrosis, and traction on, and eventual detachment of, the retina. Advanced stages may lead to blindness.

According to the 2013 joint statement by the American Academy of Ophthalmology, infants weighing ≤1500 g or ≤30 weeks’ gestation and those weighing >1500 g or >30 weeks’ gestation with an unstable clinical course should have dilated eye examinations starting at 4 to 6 weeks of age or 31 to 33 weeks’ postmenstrual age. Examinations should continue every 2 to 3 weeks until retinal vascular maturity is reached, if no disease is present. Infants with retinopathy of prematurity or very immature vessels should be examined every 1 to 2 weeks until vessels are mature or the risk of disease requiring treatment has passed. Those at greatest risk should be examined every week.

These eye examinations can be stressful and sometimes painful for a new born. ROP examinations often necessitate the use of an eyelid speculum to retract the eyelids and use pressure application on sclera (the white portion of the eye) to visualize the peripheral retina. They have been associated with an increase in pain. Hence it is important to keep the baby under observation, during and after the eye examination.

Treatment: Ninety percent of cases of early disease regress spontaneously. In most centres, laser photocoagulation is preferred because of its advantages over cryotherapy, including less discomfort intraoperatively and postoperatively, less pigmentation resulting from the therapy, and direct visualization of the area during treatment. Laser ablation of the peripheral avascular retina can prevent progression to blinding disease in patients with severe ROP and is currently the standard of care for treatment.

Advanced disease has been treated surgically with vitrectomy and scleral buckle (retinal reattachment) with some anatomic success. For advanced disease, treatment is in general much less successful.

Follow-up eye examinations: Sequelae of regressed disease such as myopia, strabismus, amblyopia, glaucoma, and late detachment require regular follow-up. Detailed eye examination is recommended every 1 to 2 years for infants with fully regressed ROP and every 6 to 12 months for those with scarring ROP. Premature infants are at risk for myopia even in the absence of ROP and should have an eye examination by 6 months of age.

The eye is possibly the fastest developing organ in the body. As soon as 4 to 6 months after birth, most functions of the eye are permanently imprinted in the brain, and if impaired, cannot be fully restored to normalcy. It is therefore essential to identify the at-risk baby so that timely examinations can be performed to prevent blindness or at least decrease its incidence.

The 10 basic rights of a newborn

Speak up for the innocent lives

The rights of children were not defined for the majority of human existence. Even in the 21^st century, children face very serious threats to life and to their holistic development in many parts of the world.

When a pregnancy is conceived, the fetus is entitled to obtain care. But, seldom has any major international or national organization defined the rights of a neonate. This Human rights day, it will be apt to propose an idea to uphold the dignity of the innocent babies. As a neonatologist, I take immense pride in advocating for the rights of the neonate as follows.

The 10 basic rights of a newborn:

1. Right to be monitored in utero
2. Right to be born healthy and right to life
3. Right to obtain the right medical care at the right time after birth
4. Right to be identified with birth defects and obtain necessary surgical care
5. Right to be registered and have a name and nationality
6. Right to get vaccinated
7. Right to have access to newborn screening, eye exam and hearing screen
8. Right to have social security
9. Right to proper nutrition in order to achieve his/her growth potential
10. Right to be protected from harmful rituals, injuries, abuse, exploitation, poisoning, diseases and extreme weather conditions

Child rights: Like all humans, children have rights. These rights are enshrined in the United Nations Convention on the Rights of the Child.

United Nations educational guides for children classify the rights outlined in the Convention on the Rights of a Child as the “3 Ps”

• Protection (e.g., from abuse, exploitation and harmful substances)
• Provision (e.g., for education, health care and an adequate standard of living)
• Participation (e.g., listening to children’s views and respecting their evolving capacities)

However, the rights of a neonate has not obtained much attention in history. One of the outstanding documents on the rights of a neonate is the “PARMA CHARTER OF THE RIGHTS OF THE NEWBORN” published in 2011.

Parma charter document states:

A neonate is a very special ‘‘citizen’’ who has rights but no duties and who, for the recognition of his/ her rights, depends totally on the attention and commitment of others. The awareness of the newborn as a person and of his/her vulnerability and dependence constitutes the fundamental grounds for his/her rights to be recognized, protected, and satisfied.

Every newborn has the right to a life with dignity.

• Right to be monitored in utero: Only 21% of mothers (1 in 5) received full antenatal care in the country (NFHS 4, 2015-16). A minimum of 3 antenatal checks is important to ensure the well-being of bith mother and the fetus. Serologies to detect infectious diseases which can potentially infect the fetus (HIV, Hepatitis B, etc) should be performed during these check ups. Ultrasound scans can closely monitor growth and vitality of fetus. Pregnancies should be categorized into high risk and low risk, and the high risk pregnancies should be referred to specialist centers.

• Right to be born healthy and right to life: Every newborn has the right to be born in the most suitable place, considering his/her foreseeable care requirements, especially if he/she suffers from or is at risk of an illness. Respect of this right requires a correct regional distribution of perinatal care facilities, served by an efficient neonatal transport service for births that take place in an unsuitable facility. Special attention must be granted to the medical, social and psychological care of the unborn child and the mother, during pregnancy and delivery. 21% of the births in the country were home births (NFHS 4, 2015-16). In rural areas, barely 37% of births are assisted by qualified health personnel.
• Globally 117 million girls go missing due to selective sex-abortions. Discrimination against girl child is a reality and is often reflected in the form of delayed medical attention and malnutrition.

• Right to obtain the right medical care at the right time after birth: Every newborn is entitled to life and the best levels of health. Addressing access to health is a key indicator of attaining children’s rights. In India, nearly 1 million children die under the age of five, an estimated 39 deaths per 1,000 live births. In case of preterm infant care, there are absolutely no shortcuts.

• Right to be identified with birth defects and obtain necessary surgical care: Congenital defects affect 1 in every 1000 babies and most of them can be corrected by surgery. It is essential to diagnose early to ensure timely correction. Some defects can be diagnosed by a complete physical examination of the baby and clinical evaluation of symptoms. It is therefore essential to have a baby examined by a Pediatrician.

• Right to be registered and have a name and nationality Only 41% of births are registered. There is a big urban-rural difference in registration with 59% of urban children under five being registered versus only 35% in rural areas. This leads to serious difficulties because they, as such invisible in the eyes of society.
• Right to get vaccinated: Total Immunisation coverage in the country stood at 62% in 2015-16 (NFHS 4, 2015-16).

• Right to have access to newborn screening, eye exam and hearing screen: A number of metabolic diseases are treatable. Newborn screening also helps in identifying G6PD deficiency and Congenital Hypothyroidism.
• Detecting hearing defects early is important to prevent mutism.
• Examination of the eye by a Pediatrician is essential to detect potentially treatable eye condition and to eventually prevent blindness.

• Right to have social security: A loving and caring environment is most productive in terms of child’s overall personality development. 73% of children in India are living in rural areas, often have limited access to fundamental needs such as nutrition, access to healthcare, education, and protection.

• Right to proper nutrition, to achieve his/her growth potential: Every newborn is entitled to be adequately fed, to guarantee his/her best psychological and physical development. Breastfeeding must be facilitated and encouraged. When it is not possible on account of the mother’s physical, psychological or personal situation, feeding must continue using human or formula milk. 58% of children between 6months – 5 years were found to be anaemic in the country (NFHS 4, 2015-16).

• Right to be protected from harmful rituals, injuries, abuse, exploitation, poisoning, diseases and extreme weather conditions: Every day, around 150 children go missing in India – kidnapping and abduction (National Crime Record Bureau 2016). 1 in every 3 child brides in the world is a girl in India (UNICEF). When there is evidence of abuse and circumstances suggest that the health of the newborn is at risk, appropriate legal measures should be taken to ensure safety of the child.

The responsibility of protecting the future of an individual lies entirely in the hands of his/her caretaker at birth and childhood. By ensuring the rights of an individual at a very young age, it is possible to ascertain the progress of a society as a whole.

Let’s make the world a better place to live for our children.

Play and activity in the NICU

Train the growing brain

Play is a way for babies to discover their world. Play and activity is important for motor and cognitive development of the baby. It is surprising to know that preterm babies can enjoy play even when they are on some respiratory support or feeding through a tube. In the middle of all the light and noise of the NICU, activity and play provides an opportunity for the baby to bond with her family.

After your baby recovers from the acute phase of her illness, and is medically stable, you can undertake a variety of activities for her while still in the NICU.

Early goals for development:

1. Vision
2. Language
3. Head Control
4. Hands to self
5. Hands to others
6. Lying on side
7. Tummy time
8. Flexibility
9. Good head shape

World prematurity day on Nov 17th, celebrates the spirit of the tiny little babies and the courage of their families in overcoming the challenges posed by being born too soon. While the medical problems are dealt well by the treating team, it is not uncommon to stay in the NICU for weeks in a stable state, to grow and feed by mouth. This is the ideal time to start activities as described below. As you read through, you will understand that all the developmental goals are interrelated.

Rule of thumb: The best toys are your face and voice.

Identify the cues: Cues are signals from your baby that tell you how she feels and what she needs. If your baby is awake, alert and grabs at objects, she might be willing to interact. You can hold her, move her smoothly, make eye contact and sing /speak to her.

On the other hand, if your baby is stiff, squirms, arches her back, spits up milk or cries, she might need a break from activity. There are some things that you can do when your baby needs a break. Use a containment hold (gently hold your baby’s head and her tummy, bottom or feet). Allow her to hold your finger. Try reducing sound and light in the room, swaddle her with a thin blanket lose enough to allow her hands to crawl up to her mouth. You can also put a rolled blanket near the feet so that she can press against it. Babies feel calmer with boundaries.

VISION: Hold the toy so the baby can look up and then move the toy slowly side to side. This maneuver is best tried while lying on the back. Perform a LAP TIME with the help of a nurse. Talk and encourage eye contact. As she looks at you, you can slowly move your face from side to side to see if she will follow. On the cradle, place a colorful toy in the middle and also on the side.

LANGUAGE: Babies prefer soft and quiet sounds over loud and startling ones. Talk to your baby softly and imitate her sounds, make eye contact and use lots of facial expressions. Read her a story or sing a song.

HEAD CONTROL: Develop head control by turning head to the left and to the right when lying down and in supported sitting during the LAP TIME. Sit your baby up straight and use your hands to support the head and shoulders. Move your fingers slightly away to allow small movements of the baby’s head.

HANDS TO SELF: Practice bringing hands to the midline of the body and to the mouth. Positioning her arms and legs tucked up into the middle of her body during swaddling helps achieve this goal. Gently place your hands behind their shoulders to clap their hands together and play pat-a-cake. During the LAP TIME, bring their hands to touch knees, feet and tummy. Practice the same while lying on side.

HANDS TO OTHERS: Encourage the use of their hands to reach out and explore faces, bodies and toys. This goal goes hand in hand with the vision development goal. While lying on side, use a rolled towel behind their back to keep in a good position so that they can touch and explore a toy. Keep a colorful toy which can produce gentle sounds when handled.

LYING ON SIDE: Practice side lying and trunk rotation to encourage playing with hands together and to prepare for rolling. When baby is lying on their side in bed, they will enjoy having their hips gently moved from side to side in preparation for rolling. Once baby is comfortable with this movement, you can try rolling from one side all the way to the other side and rolling from back to tummy.

TUMMY TIME: Practicing Tummy time a few minutes a day, a few times a day, can help prevent early motor delays. Tummy time can be performed in various ways.

1. Tummy to tummy: skin to skin contact with your baby, allowing for eye contact.

2. On the baby’s bed: Get down level with your baby to encourage eye contact.

3. Lap soothe: Place your baby face down across your lap to burp or soothe him. A hand on your baby’s bottom will help steady and calm.

4. Tummy down carry: Slide one hand under the tummy and between the legs when carrying baby tummy down. Nestle the baby close to your body.

FLEXIBILITY: Maintain and gradually increase range of motion through active play and passive movement in all the positions explained above.

GOOD HEAD SHAPE: Make sure head turns equally to both sides to avoid head flattening. Ensure that baby can sleep in the safe sleep position when she is ready for discharge.

It is never too late to start a good thing. Please ask your Neonatologist if your baby is ready to be handled. Always perform play and activity under the supervision of a nurse or NICU physiotherapist. If baby develops increased breathing rate, changes colour, spits up milk or chokes on it, stop the activity and raise the alarm immediately.