Most expectant moms can’t wait for the baby to arrive. Every day past the due date is an agony of waiting, as the heavily pregnant mother copes with jitters and discomfort and looks forward to the day her little bundle of joy will arrive squalling into the world. But with some, it is the other way around — the baby surprises you with an appearance much earlier than expected or desired. This was certainly the case with me. Despite a delivery date in June, my twin boys were born in March — a whole 13 weeks before the expected date. They were tiny and weak, and when I saw them I shuddered with fear and guilt. I had been on near complete bed rest throughout the later stages of the pregnancy but a day before the babies came, I had gone out to a restaurant. ‘Was it my fault?’ I asked myself as I saw my silent newborns being carted off to the Neonatal Intensive Care Unit (NICU). “The next 24 hours will be crucial,” said the doctor as he took my babies away.
All I could do was to wait, watch and pray. Weighing a mere 1.2 kg and 1.3 kg respectively, the tiny babies clung to life against all odds. I longed to cuddle them, to stroke their hair and fondle their tiny feet but, I was forbidden to touch them and was only allowed to see them 24 hours after the birth. I stared at the veins showing through their thin skin and gazed at their fragile bodies which were trapped in incubators and connected with tubes. For a new mother, it was terrifying.
But doctors warned me that this was only the beginning of the challenges my babies and I would face. Initially on ventilator support, the babies were only able to breathe on their own after nearly three months of continuous efforts on the part of the paediatrician and the staff. Now, the main target was to increase their weight and I was told that feeding the babies expressed breast milk — a mentally and physically taxing task — was the only way to keep infections away.
When we left the safety and constant care of the hospital and took the babies home, I remember just how vulnerable they looked. Relatives who came to see them didn’t know whether to congratulate us or look mournful. Some people couldn’t help exclaiming out loud, “How will these bundles of bones survive?”
Their fears were not completely unfounded. The chances of survival for extremely premature babies are very low. According to leading paediatricians, less than 10% survive when born at week 22 and the odds only improve to a 50-50 chance of survival by week 25. Additionally, they are at a higher risk of other health problems such as delayed developmental milestones, affected hearing or vision, and weak motor skills.
My goal was to see my children become as normal as any full term child and constant observation was required around the clock until they achieved their target weight. Even the instinctive act of breathing did not come naturally to them as their brain was too underdeveloped to even realise that breathing was required to stay alive. Sleep apnea and the constant fear of crib death was a major problem with one of my babies: he would stop breathing for a few seconds during deep sleep, and would have to be woken so that he would resume breathing. Neither of them could be fed in the normal way. Instead, a tube was inserted directly into their stomachs through the mouth. Continuous eye exams and hearing check-ups were also required.
But the babies fought for their lives with incredible tenacity. The problems did not vanish but they started tapering off gradually. Today, when I see my two boys playing, talking, jumping around and even fighting with each other, I am filled with pride. Other parents of premature babies have similar tales to tell.
Shehnaz, whose twin girls were born in the 30th week of pregnancy, says she feared that her babies — so tiny they could be cupped in her two hands — would not be able to make it home. While one baby was weaned off from ventilator support on the 18th day of her life, the other one had to have surgery on her oesophagus — a process that required repeated operations over the course of a few days. As the child was taken into the operating theatre, the mother prepared herself for the worst.
It was touch and go, and during the initial surgery, the baby’s heart stopped beating for a few minutes. Then, on the third day of surgery, there was a brain haemorrhage that could have resulted in brain damage, but thankfully no permanent damage was done. Now, the baby girl is 18 months old and while she still needs treatment, she has won the struggle for survival.
Yasmeen, who had pre-term triplets at 30 weeks, also has a story to tell. “One baby had a serious lung collapse and went home with an oxygen cylinder attached to a ventilator, while another had a third grade brain haemorrhage. The third baby suffered from intestinal issues, which required multiple surgeries. Today, though,” say Yasmeen as she beams with pride, “the 5-year-old boys are at home and it is incredible to see them all fine and healthy.”
That these stories have happy endings is largely thanks to the miracles of modern medicine. In the ’50s and ’60s half of premature babies would die from these multiple issues, but today 90 percent of them survive and lead full, healthy lives.
For the parents, having a premature baby can be enormously traumatic. It is an emotional rollercoaster ride swinging from shock, denial and anger to hope and back again down the slippery slope. While dealing with this situation can be an absolute nightmare, the parents’ patience and determination give their children the best chance of survival and a healthy life. With the added support of skilled and dedicated physicians and nurses, even extremely premature babies can lead perfectly normal lives. But all that is easier said than done. Shazia, who gave birth to a pre-term baby, experienced intense guilt and could not accept the fact that it was not her fault. At the same time, she also refused to accept her child: “I will never take him home,” she said.
Parents may feel disappointed to see the tiny baby: a wrinkly little bundle of thin bones, surrounded with tubes in the incubator only able to breathe with the aid of a ventilator. They may become angry and blame each other, which is the worst thing they can do. The key to dealing with the situation is for both the parents to support and encourage each other. Parents who are strong and endure the challenges with fortitude can help give their child a fighting chance.
The most crucial support for parents and babies often comes from the nurses. While the child specialist is only around for a short time, nurses work round the clock and are always on their toes to provide the baby all it needs. They educate the parents about the baby’s condition and needs, help the frightened mother develop a bond with the child, as well as collaborate with the physicians and give him information about each baby. The best in the profession understand that having a premature baby is exhausting and strenuous. “We try to provide emotional and spiritual support to the parents, by giving them hope,” says the head nurse at a leading hospital in Karachi. “The smallest achievement, such as weaning off the oxygen cylinder or tapering off ventilator support or increasing the baby’s feed puts a smile on the parents’ face. This is our true moment of success. When I see babies who were once under critical care in the NICU grow into smart young children, I realise miracles do happen!”
Once the baby leaves the NICU, extra care must be taken. Not only are premature babies more prone to the ailments that can affect all newborn infants, they also need extra care, from taking their temperature every few hours to being on the lookout for alarming symptoms and limiting visitors to avoid infections. They are at a higher risk of eye problems and commonly have respiratory tract issues. Dr Tanveer A. Chaudry, an eye specialist and surgeon for children who practices at the Aga Khan hospital, says, “All premature babies born before 32 weeks and/or weighing less than 1500gms should be screened for retinopathy of pre-maturity. This disease affects a minority but, if untreated, can lead to permanent blindness.”
One way to help the baby is to exclusively breastfeed him: this builds immunity and reduces risk of other health problems. Studies suggest that preterm infants who are fed breast milk grow up with higher intelligence scores, and better neurological development parameters. The very first drops of breast milk (colostrum) is the best food for a sick, tiny, early baby. Parents can also help such children through spending as much skin-to-skin time as possible.
With judicious care, the developmental problems of a premature baby go away with time and the child ends up performing all activities that a normal or a full-term baby is supposed to — from crawling to walking, sitting up and taking his first shaky steps. Very few people can understand the joy parents of premature babies experience then.
A few years ago, I met a couple who seemed very resilient, despite their child being born 25 weeks pre-term. Despite all the difficulties the child faced, the parents made it right through to the end. Now their son is a smart kid studying in a school with a competitive environment, as sharp as any other child who was born full-term. Stories like this teach other parents to be strong and not let unhealthy remarks from others discourage them.
The importance of peer support cannot be overstated. “It is always a source of relief for the parents to see the other pre-term survivals enjoying a happy healthy life. It is important for a mother assuming the responsibility of a fragile baby to know that she is not alone,” says one parent of a premature baby.
In a country like Pakistan, where quality healthcare and awareness are scant, parents need to be extra strong to fight the ignorance and shield their children from any social stigma which may be associated with them due to their premature birth and potentially delayed milestones. All babies are gifts from God and as such deserve all the help that can give them a chance at a healthy life. A baby is a blessing, and no matter how sick it may be, the parents should focus on their child’s health, rather than worrying and fretting.
Published in The Express Tribune, Sunday Magazine, April 8th, 2012.