Issue 102 / November - December 2014
Never Say "I Will Eat My Hat"!
Tugrul Cagri Yavuz
It had been only 23 weeks since we got the good news that we were going to have our first baby. However, on that warm September day, we were also told that the delivery was quite close. Considering that a full-term birth usually occurs around the 40th week of pregnancy, our baby would come to this world about four months early. An ultrasound assessment predicted the baby's weight at 475 grams (one lb and one oz). Our doctors told us that many organs at this stage of gestation are not fully developed and cannot function properly. Of particular concern were the lungs. Lungs in an unborn baby fully develop after nearly 37 weeks of gestation. This meant that our baby would need breathing support through a ventilator. Based on weight and gestational age, her survival chance was only 10%. However, since the hospital where she would be treated had the second best neonatal intensive care unit in the United States, that number would perhaps be as high as 20%. Even if she survived, we had to prepare ourselves for major complications.
Let me back up here a little. About two years ago, just before I received my doctoral degree, I had started looking for jobs. My wife and I had already spent about six years in the same Midwestern city, and we wanted to move to another region of the country. I sent about 100 job applications to various universities and companies, regardless of location. However, nothing came out of those applications, save for two interviews. Eventually, I ended up receiving a job offer from an academic institution to which I never applied. This college happened to be in the same city we already lived.
Interestingly, we had changed my wife's doctor just a few months before the delivery. Our previous physician worked at a different hospital system, which had a neo-natal intensive care unit but not nearly as good as the one that admitted my daughter. My wife and I, without knowing what was going to happen, were apparently guided by someone Who knew what was going to happen. Our seemingly unintentional choices - including having only a single job option - eventually led to my daughter receiving care at the best medical facility possible.
"We will try and delay the delivery as much as possible," said one of the high-risk pregnancy doctors, and then added, "each minute in the mother's womb is gold for the further development of organs." They admitted that there is no technology in the world that can provide the same ideal conditions as exist in the mother's womb. These conditions include breathing (oxygen intake), feeding, and even the comfort of the baby. My wife and I could do nothing but pray and wait. In the meanwhile, we decided to name our daughter Meryem, which is the Turkish version of Mary.
About 48 hours after hospital admission, we were told that delivery could no longer be delayed. I did not want to leave my wife alone in the delivery room, even though I suffer from mild blood phobia (hemophobia). I tried to condition myself to the sight of some blood and a baby that would weigh only around a pound. However, the first look at our baby was quite a shock to me! Her skin was purplish red and quite transparent, revealing blood vessels. Later, we learnt that keratinization of the skin is not usually complete until the 25th week of gestation. Also, fat layers under the skin usually do not develop until this stage. The combination of these two factors not only made Meryem's skin translucent, but also meant that she did not have a strong skin that would protect her from hot or cold, and high or low moisture levels. She would need to be kept in an incubator. As soon as Meryem was born, she was immediately taken to the adjacent room where a crew of about ten started working on her. She was first weighed and then intubated. This last procedure involved inserting a tube into her lungs, which would deliver oxygen and move out carbon dioxide with the help of a ventilator.
That is how our one pound and one ounce (480 grams) baby was born. According to our doctors, Meryem tried to breathe on her own, which was a rather surprising development. They also did not forget to reiterate that anything could happen at any time. My wife fell asleep after the stressful delivery, so I decided to visit Meryem as soon as possible, considering that I might not see her again. She was taken to the neonatal intensive care unit (NICU) of the hospital in her incubator.
I was in a different world when I entered Meryem's NICU room. I was greeted by different alarm sounds, numerous screens displaying different graphs and numbers, and different equipment generating a lot of noise. Little Meryem was wiggling in her incubator, as if she wanted to tell us she was not comfortable, but she was not complaining. I was allowed to touch her, but only through the small window of her incubator, which was protecting her from infections and other environmental factors. I also whispered the call the prayer (adhan and iqama) to her ears, and then her name, which is a tradition in Islam. The latest technology and a number of well-trained healthcare personnel were serving her in lieu of the perfectly designed amniotic sac and placenta. Yet again, I was warned to prepare for the worst outcome. Under these thoughts, I said good-bye to Meryem and went to my wife's room. This is how our six-month adventure in the hospital started.
Our initial days at the hospital were quite challenging. We were given a list of complications that Meryem could endure, some of which could be fatal. A few of these possible complications were: various bacterial and viral infections, lung and breathing problems, intraventricular hemorrhage (bleeding in the brain), periventricular leukomalacia (white matter brain injury), patent ductus arteriosus (a blood vessel failing to close), necrotizing enterocolitis (tissue death in the bowels), chronic lung disease, retinopathy of prematurity (blindness), and deafness. Moreover, some of these complications could lead to other complications such as cerebral palsy, impairments in ambulation, speech problems, cognitive problems, physical and mental disabilities, and even death.
Meryem had a tube inserted from her mouth going deep into her lungs; this tube was connected to a breathing machine (oscillator or ventilator). The effectiveness of her breathing was periodically checked. Since she could not be fed at this stage, an IV line was providing her fluids and a little bit of nutrition. She also needed blood transfusions to replace the blood that was lost during various tests. Due to various infiltrations in her body and her immature immune system, she was vulnerable to infections, which would rarely happen in the mother's womb. As a matter of fact, Meryem would have to deal with a number of bacterial and fungal infections, including pneumonia, in the hospital. A couple of these infections were quite severe and would lead us to think that we were losing her.
In order to accelerate lung growth, Meryem was administered steroids. However, steroid treatment caused a steep increase in her blood sugar levels. Meryem's doctors told us that they would have to stop feeding her because of elevated blood sugar. That would mean Meryem would not be able to gain weight and thus her lungs would not develop. In fact, Meryem lost about two ounces (60 grams) during this period and ended up weighing only 11 ounces (420 grams). This vicious cycle reminded us of the extraordinarily ordinary system in the mother's womb, where everything functions perfectly in order. A number of the brightest neonatologists in the country were using the latest technology and doing their best to treat Meryem. And they were admitting that a procedure they would perform to correct a dysfunction would lead to a dysfunction in another organ or system. All these developments made us marvel even further at what a perfect environment for child development a mother's womb is!
Another distinctive example of this magnificent design is the closing of the ductus artery in newborns. Since oxygen is provided to babies through the umbilical cord in the uterus, babies do not really breathe, and do not, hence, use their lungs. It would be inefficient for the blood to go through the lungs in unborn children. As such, a blood vessel, called the ductus channel, carries the blood towards the aorta, bypassing the lungs in the unborn. However, since babies have to start breathing and use their lungs right after delivery, an open ductus channel would be problematic, as blood needs to be oxygenated in the lungs before being sent to the aorta. Hence, after a short period following delivery, the ductus channel closes "on its own." In premature babies, medication or surgical treatment is required to close the ductus. If not closed in time, edema (fluid accumulation) can occur in the lungs and other organs.
Meryem had a severe edema problem. In order to address the unclosed ductus and edema issues, Meryem's doctors gave her medication as soon as possible. We were told that if the drug did not work, they would have to take route B and surgically close the ductus. Even though the surgery per se did not bear significant risk to Meryem, we were concerned about the side effects of anesthesia. I read articles which suggested that the use of anesthesia agents in such little babies could cause heart and brain problems. We continued praying right away for a successful drug treatment. Unfortunately, the medication did not work. Meryem's doctors sought our permission to perform the surgery, as they did not want to lose time. They also explained to us that a second drug treatment could be tried, which would have a very low success rate. Weighing our options and considering the risks of anesthesia, we asked the doctors to administer the medication for a second time and asked our friends to join us in praying for Meryem. The next day, our doctors were quite surprised; Meryem's ductus was closed.
During the long days at the hospital, we read about prematurity, how a preterm baby was different from a term baby, and discussed all of this with my wife. We were simply amazed by the new information we have acquired on the splendidly designed development of a baby. We always looked at newborns and deliveries as something relatively ordinary. We never felt the need to think in depth about these issues before. After elaborating for hours on the perfection of the development of a baby, we came to an agreement that it would be impossible for us to accept speculations about how this all would happen "on its own." We felt the great urge to seek refuge in the Owner of this magnificent system, and send our prayers to Him. We also asked for prayers from friends, relatives and spiritual individuals, who in our opinion had a closer relationship with the All-Knowing. We believed that, because of these prayers, Meryem would remain immune to major complications that I mentioned before, despite the pessimistic predictions of our doctors. Many times, we saw the surprise in our doctors' eyes after an unpredicted positive outcome.
One of these surprising developments was about Meryem's sight. Devices that made Meryem breathe had to use air that contained up to 80% oxygen. As you may know, the air we breathe has 21% oxygen. The high levels of oxygen premature babies need to inhale, due to their immature lungs, usually cause complications in the eyes. We were informed that Meryem had a very high chance of needing an eye surgery to prevent blindness (retinopathy of prematurity). In fact, one of our doctors (let's call her Dr. Smith) would explain this likelihood by saying that, "I will eat my hat if Meryem is discharged from the hospital without an eye surgery!" Dr. Smith was actually a devout believer. Hoping that she would understand, we told Dr. Smith that we would maintain our trust in God, and keep praying. She reminded us about her strong belief in God, but also told us not to be hopeful. Just before Meryem was discharged from the hospital, we had a big cookie made in the shape of a hat, since we thought that Dr. Smith would have a hard time chewing on a leather hat. Yes, Meryem did not require an eye surgery! Dr. Smith approached this gesture quite humbly and thanked us for the reminder. She went on to say that she would keep the cookie as long as possible as it would remind her of the power of prayers.
After about a six-month stay at the hospital, Meryem was discharged on a cold day in March. These months had been a really tough period where we had to face many unknowns. The concern of losing Meryem, not being able to hold her for a long time, the risks of many complications, driving back and forth between home and the hospital countless times, receiving a call from the hospital in the middle of the night - all these tested our faith.
"Then, surely, with hardship comes ease
Surely with hardship comes ease"
We remembered and prayed this word of God, as many times as possible during this entire ordeal. We felt that having faith helped us a great deal to stay calm and conscious, especially when we had to make difficult decisions.
Meryem is about four years old now. Except a few minor issues, she is quite healthy. Pediatric specialty doctors who saw her, especially right after the discharge, would be surprised to see her so healthy. In particular, Meryem's neurologist, after telling her that we believed the prayers were the primary reason she survived, would say, "I agree, as we cannot really explain her good condition only with science and medicine."
Many immature babies cannot survive even though all necessary treatments are applied and heartfelt prayers are made. This does not mean their prayers are not heard, nor would we think otherwise if we were to lose Meryem. Prayer is a duty upon all of us to show our thanks for all the blessings we have been granted. The fruit of these prayers (in addition to doing fully what must be done) can either be an immediate one in this world or a postponed one in the life to come, and we may not know what good may come out of what seems ugly on the outside. The poet Nimah Nawwab puts it so well:
"God gives answers in three ways: He says YES and gives you whatever you Want. He says NO and gives you something Better. He says WAIT and gives you the Best."