January 08, 2009

A mother’s poignant tale about her premature son and the battle to save his life By Nadia Mustafa

The first time I was able to hold him was 20 minutes after he passed away. My second born and my first son was wiped clean of all the blood, freed from the bandages, wrapped in a white sheet and carefully handed to me by a nurse. I had requested the attending staff at the hospital not to cover his face so that his father and I could have a last look at our son.

Our last look was also the first one without the glass barrier of the incubator, without the interruption of the thin IV tubes and various other instruments surrounding him.

Daniyal was born in the 24th week of pregnancy. Complications set in from the beginning of the second trimester and finally, I delivered a baby weighing just 535 grams.

God bless the doctors and nurses in the hospital who offered us honest opinions. Miracles happen, we were told again and again and, as an added boost to our optimism, we met a 27-year-old undergraduate medical student, who was born with a birth weight of just 1.1 kg.

Even at this age she had a weak immune system, coming down with a cold and a runny nose with every change in the weather. However, the point was that she had survived and was living a normal, fulfilled life. It gave me hope. Medical science must have grown by leaps and bounds in the last 27 years and if this girl could survive so many years ago, how much brighter my son’s chances must be. It was a forlorn hope but it kept us going.
 

According to the World Health Organisation’s definition, births before 32 weeks of gestation account for most neonatal deaths and disorders. The shorter the term of pregnancy, the greater the risks of complication. Infants born prematurely have an increased risk of death in the first year of life (infant mortality), with most of that occurring in the first month of life (neonatal mortality).

We met another family. Mehreen, a young mother, gave birth to a baby boy in the 29th week of her gestation cycle. Her preterm labour was imminent as, in one of her routine ultrasounds, a cyst was discovered in the ovaries, which had to be removed. The surgery delivered the baby boy Amin, weighing 1.3 kgs. Both the child and mother went to the brink of death and back again. Amin needed three laser eye surgeries in the first five months of his life and now, even at four years, the marks of the needle were visible to my eyes. He was hyperactive and his speech was not clear. However, he survived the odds and is expected to catch up with other boys of his age. Meeting them bolstered our spirits.

Immediately after birth, Daniyal was taken to the NICU (Neonatal Intensive Care Unit) of the hospital, where there were18 babies at the time. In order to enter the ward, exposed arms, hands and face had to be scrubbed clean and sweaters removed, as their fibre could harm the patients. Cell phones switched off as they interfered with the sophisticated machinery. Clean hospital gowns to be worn to minimise any exposure that may occur. Only after going through this ritual was one allowed to enter the ward and see one’s baby.

Even with so many babies, the eerie sound of beeping machines and whispering consultation was all that one could hear. No crying, no gurgling, not even a moan. There was not a tear to be seen.

On one of our twice-a-day visits to Daniyal, we had our backs towards him, talking to his attending consultant, when I happened to turn towards his incubator and saw his face crumpled up, eyes tight shut. He was crying. At that moment I realised that if he was not in the nurse’s line of sight, no one would notice him crying, no one would pat him or soothe him. What a contrast from my first born, Rija, who is picked up, kissed and hugged the moment she lets out a cry. My arms ached with the need to pick up my son, cradle him and soothe away all the pain, but the glass barrier was unrelenting.

Whenever we went to the hospital, questions bothered me, such as, where did I go wrong, why me? There were no answers, or at least none that satisfied me.

Known causes for preterm births

• Pre-eclampsia
• Intrauterine growth restriction or
• Maternal illnesses.

Pre-eclampsia is a medical condition where hypertension arises in pregnancy; along with significant amounts of protein in the urine an increase in blood pressure is the most visible sign of the disease. It may develop from the 20th week of gestation and its progress differs among patients; apart from abortion, Caesarean section, or induction of labour, there is no known cure.

Intrauterine Growth Restriction is a generalised title, where the foetus is smaller than expected when compared to its gestational age. Causes can be due to the foetus or placental problems.

Daniyal had an X-ray nearly everyday; he was pricked for insertion of IV fluids, his oxygen saturation level was low, and to support his miniature lungs, he was provided with oxygen via two small tubes, fitted in his nose.

Apart from this, on day three, his platelet count dropped suddenly and the doctors indicated that this could be an onset of an infection. Platelet count was between 10,000 and 11,000, and the normal range is between 140,000 and 450,000, so the drop was significant. Following a blood culture, the attending consultant began broad spectrum antibiotics to treat the cause.

This day marked the beginning of a gradual decline in our baby’s health, and along with that, a decline of hope.

Many preterm babies suffer from low blood pressure, which reduces the oxygen supply to their brain. This makes them much more vulnerable to a range of neurological problems such as blindness, deafness, low IQ levels and hyperactivity.

Sadly, of the four million neonatal deaths that occur every year, 98 per cent are in the poorest countries of the world. Nearly 27 per cent of these four millions newborn deaths worldwide are due to preterm delivery.

Out of every 100 deaths in Pakistan in Year 2004, 57 were due to neonatal causes.

Preventive measures

Early detection of unprompted preterm labour is difficult. Initial symptoms and signs are often mild and may occur in normal pregnancies, e.g. false labour. The most commonly used clinical tests today to determine the risk of preterm labour is transvaginal ultrasound and the fetal fibronectin test.

A Macdonald suture can also be put in place, with the aim of supporting the cervix before reaching the full term. The stitch is removed before the actual birth, usually around week 37 of pregnancy. This procedure can reduce the chances of miscarriage and may prevent a very premature birth.

I was happy in the thought that along with all the medication and fluids that were injected in my son’s body, my breast milk was also provided to him, via tubes. That was on his fifth day and probably our biggest victory. Anything was possible now.

During this entire crisis, I was racked with guilt that I was ignoring my three-year-old daughter, Rija. As a full time working mother, I raced home each evening, distractedly played with her while waiting for my husband to return from work so that we could then go and meet Daniyal. Thank God for the blessing of grandparents who were just a phone call away. My younger sister, despite her final exams, took Rija out to nearly all restaurants with play-places and to all the theme parks, not once but several times. I know that gifts and monetary items are no substitute for parents’ attention, but at that time, I really had too much on my mind to care.

Friends also helped in an enormous way. Once, one of the doctors had told us that the results of the tests would be available in the next hour so we stayed back at the hospital. The hour turned into two and I asked an old friend to bring milk for Rija at 11 pm. She arrived with new bottles, toys, a small blanket and socks, something Rija eagerly wore, because of the cold. Her simple generosity deeply touched my heart.

Going by my personal experience I know there are two types of visitors: those who make you feel better about the whole situation and those who make you feel worse. Here are some suggestions on how to be part of the first group.

• The mother doesn’t want to hear how difficult it was for you to raise your full-term baby or how long your labour was. She is only concerned about the situation at hand

• Don’t say “Let me know if I can help.” Cooked food is a great help. Distracting the other kids is a difficult task. Look for ways to help and just do it, don’t wait to be asked

• Don’t discuss the possibility of death or severe complications. Parents don’t want to think on that road, so please don’t initiate that topic

• When asking about the baby’s progress, always listen carefully to the parent’s response. Then, the next time you speak with them, refer back to the last thing they told you. This shows you really care

• Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome

• Don’t ask, “When is she coming home?”, because the parents don’t know, even the doctors cannot answer that question. Only God knows that. There is no shortcut to bringing the baby home soon

• Unless you are a doctor, don’t offer too much advice

• Avoid discussing disappointing news within hearing distance of older siblings. Kids are smarter than you think, and can suffer emotionally also

• Even after the baby comes home, he is still vulnerable to infections. Do wash your hands before handling the child and avoid kissing or touching the baby on the face.

• Smokers should avoid coming at all. These early-beings have weak lungs and this added pollution will only add to their misery

And in case of the death of the new born, don’t say, “Good thing he died young, you will quickly forget this time and move on.” The wound heals but the scar stays.

Occasionally, we had to wait outside the ward, while the doctors were making their rounds. That was usually the time when we met with other parents. The conversation was always hushed, always incomplete. The fathers had their lips set in a tight smile, while all the ladies had a grim face. Their faces mirrored their emotions. The anxiety level was so strong, I felt I could reach out and touch it. We all had ventured onto a path where the next hour was unknown to us. No words could help, no touch could heal.

One day I noticed the parents of one of the babies in consultation with the attending staff; their faces were sombre, their bowed shoulders spoke of a burden too great to bear. On our next visit, their baby’s cubicle was empty. I did not ask the nurse about that baby, I did not want to know.

Advice for husbands

• Don’t tell your wife it is not her fault. Explain why it happened. I was racked by the guilt that I alone was responsible for the early birth; my husband helped me realise that was not true

• Ask questions on her behalf. The mother is generally too depressed to assess the situation

• Be available when your wife asks for help. Don’t tell her that you have an international conference call scheduled at the same time as the doctor’s visit. You are indispensable only for your family; your office can manage without you

• If you really are needed elsewhere, call when you can and ask about your son\daughter. This shows that your family is in your thoughts

• Every day, try to take out at least 20 minutes just for yourselves. Move away from the hectic schedule of commuting to the hospital, office and home. Sit and just talk, without the interruptions of other kids, cell phone or any other distraction

• Just listen. Sometimes your wife just needs to let out her thoughts. She doesn’t need a solution or a remedy, just an ear to listen to her and a shoulder to cry on.

One day we received a telephone call from the hospital as we were on the way home. This was a first as we had never received one earlier. With my husband driving and talking on the cell phone, we turned around and headed back towards the hospital. When we got there, the initial prognosis was that Daniyal had taken a bad turn and the doctor was ‘looking at things’. This was probably his way of delaying the bad news. Two hours later, we were told that he was not responding to any medical procedure and had had a cardiac arrest. During all this time, we weren’t allowed to go inside the ward; the curtains of the nursery unit were drawn together, and we couldn’t see him through the visiting gallery. It may have been just a few hours but the agony was enough for several lifetimes.

They tried to resuscitate him for 30 minutes, but nothing worked and finally the hospital staff stopped trying. This chapter of our lives had now ended.

Daniyal passed away at just nine days of age. The days that followed were even tougher than the days he was in the hospital. Bereft of the hectic schedule, the hospital trips, the minute-by-minute progress report, we felt time hanging on our hands with nothing to fill it but our misery. It was in this bleak hour that we truly appreciated the love and support of our family and friends and thanks to them, we found the strength to move on. Today life seems to be back to normal but I know that a small part of me remains buried with Daniyal.