My Encounter With Gastroschisis

Commencing from ground zero in the United States of America has had its many hills and valleys, challenges and unforeseen circumstances. One of the most petrifying moments in my life occurred in September 2011 when I was five months pregnant with my first child. I was doing my five month ultrasound to confirm that the sex of my child was male (in my heart I already knew), when the ultrasound technician observed some abnormalities. The atmosphere in the examination room had changed and so did the technician's voice. I knew at that moment that I had something to worry about. She explained to me that she was observing some abnormalities and needed to speak to the Obstetrician for a moment, she excused herself and exited the room. My heart was pounding as I lay on the examination bed waiting for someone to return to the examination room to explain to me exactly what the abnormalities were. I initially thought that it was something concerning the Placenta Previa condition which I was previously diagnosed with during the third month of my pregnancy. Nothing could have prepared me for the words that I was about to receive from my doctor as not only was the condition unknown to me, it was also one of the worst things a mother could hear about her child. The technician returned and told me to get dressed and wait in the waiting room to speak with my doctor. I did as I was told. I returned to the waiting room and waited until the doctor was finally able to speak to me. She was young and very pleasant but she spoke to me like a patient, not as a mother that was having her first child. She explained to me at length that my baby's bowels were developing outside of his body through an opening in his abdominal area and he may have a condition that is known as Gastroschisis. To be honest, that was the only thing I heard because by this time, my eyes were welling up with tears as my brain began the natural process of thinking the worst. My first thought was, my pregnancy was not viable and I would be told to terminate my pregnancy. I was instantly distraught. The doctor saw this and stopped her informative lecture enough to comfort me. She explained to me that it was nothing I did, that it was a congenital defect and that they were going to immediately refer me to a specialist who would be able to further assist me with the condition.She touched me soothingly to help me feel better but all I wanted was to see this specialist who could possibly solve my baby's medical problem. True to her word, I was immediately referred to a specialist and they even scheduled an appointment for me for the Monday of the following week. That took some of the edge off the moment. I told my husband who was working out of town at the time. He said what little he could say to make me feel better but we both knew that we did not know enough to be reassured by words of consolement. I tried doing some research, all of which only magnified my worst fears. I decided to relax and pray until my appointment.

The following Monday it was raining cats and dogs but I was up bright and early just to ensure I arrived on time.Once I was able to see the specialist, they did their own ultrasounds and medical procedures and was able to confirm for themselves that my baby in fact had Gastroschisis. I was disheartened, but the specialist was a considerate and kind man and he basically told me not to worry because the condition was absolutely fixable. He told me to get off Google and stop scaring myself as my child was none of those "worst case scenarios". He also used the analogy of a car with a punctured tire to describe my situation. He explained that a car does not become disposable because the tires are punctured, instead, we fix the tires and keep the car.The analogy was simplistic but appropriate. It is cuter now in hindsight but at that moment I was just waiting to see what they could do to help my growing child. They explained that once I underwent a schedule C-section to minimize complication during child birth, my child would have to be transferred to a children's hospital in Atlanta where they would have to perform surgery. Once my son was at the children's hospital, The medical team would first have to put my baby's bowels back into his abdomen and then close the opening. This process he explained would take about two weeks and the healing process would take an additional two weeks. He told me my baby would be in the hospital for a duration of a month. In the mean time, he and his staff would monitor my pregnancy to ensure that the baby continued to develop otherwise normally.
Aside from the Gastroschisis, I had normal pregnancy. Towards the end of my pregnancy I started retaining fluids which gave me and my doctors a little scare as we thought that it was due to abnormalities due to my baby's condition but as it turned out, I was experiencing some type of block in my urinary ducts due to my unusual diet. I ended up having to be admitted in the hospital a few weeks ahead of time because of early contractions and my son was delivered via emergency C-section during week 35 of my pregnancy. He was then transferred to a children's hospital in Atlanta where he remained for three months. It was the most stressful three months of my life. When he was born, he was the most adorable little person I had ever seen, even with his bowels placed in a containment bag. I could not hold him but I was able to hold his little hand. My husband and I took pictures and made videos to remind us of the moment. Yet, when I visited him four days later at the Children's hospital, I doubled over in shock because my baby was barely recognizable to me. He was completely swollen from head to toe. His eyes were swollen shut and he was heavily sedated. He could barely move and he could not cry because he was intubated with a  breathing tube and stomach suction. He had Intravenous needles attached to him for feeding purposes, medications and saline. He was attached to various monitoring devices of all types as well as a catheter. It was quite a horrifying sight. I was warned to some extent but the visual was still shocking. Nobody wants to see their baby in that condition. I cried for fifteen minutes before I was able to compose myself. I did not want to leave that first day but I had to go home and rest as I was just discharged from the hospital. 

However, I returned the following day with my clothes, toiletries and medication and I lived at the hospital until my child was discharged. His father was able to visit weekly due to his job and he was also emotional when he saw his son in the condition he was in.My son's surgery took place that week, due to a mishap with a nurse at the hospital which I do not wish to disclose at this time, but it worked out in my favor as it hurried along the process. They were able to remove the breathing tubes and other intubation devices a week and a half later and they were also able to remove his catheter as the swelling went down and he was finally passing urine on his own. Slowly but surely I was seeing a light at the end of the tunnel. However, this was short lived as somehow my son had stopped breathing the day I had chosen to go home for some more clothes. My husband was there when it happened. They had to replace the breathing apparatus down his little throat. However, it only remained for a couple days as his breathing was normalized. This marked the beginning of other problems. After that my son experienced abdominal bleeding as well as drug withdrawal symptoms which included tremors that resembled small seizures but we trudged on, praying that eventually my son would be able to leave the hospital and be a normal child.

They had finally decided to try his feeding therapy to see if his intestines were operating normally.It was a success for about a week and half. Unfortunately, the day before my son was to be discharged, his intestines started exhibiting symptoms of mal-absorption. He had repeated "projectile vomiting" as well as "dumping" which occurs when the food is not being broken down by the intestinal organs and instead, the food is passed out through the bowels undigested. In other words, It was coming out in the same form it entered the body. My son had to once again be attached to an intravenous feeding tube and his discharge was postponed indefinitely. I was crushed, but at the same time, I was happy that the problem was detected before he was discharged as his health would have been even more compromised once he was away from the hospital without a doctor being able to give him immediate attention.

Eventually, my son had regained the weight he had lost due to the mal-absorption and he was well enough to leave the hospital. My husband and I were given instructions concerning how to care for him and his diet was restricted to predigested milk. We have had many emergency situations since then where he had to be rushed to the emergency room but he has otherwise been healthy and normal. He turned four years old only a month ago and I am happy to announce that he now drinks whole milk and chocolate milk with no digestive problems. In fact, he can now eat whatever his little heart desires. Ironically, he is a picky eater. He is also a handful but that only signifies to me that he is a normal healthy growing boy. He is an absolute joy and the ultimate evidence that miracles do happen.

July 30, is Gastroschisis Awareness Day. According to the website Children of Alabama, more than 1871 infants in the United States are born with Gastroschisis. You can show your support for moms and dads everywhere whose child was born with the gastrointestinal defect by wearing your green ribbons or donating to foundations that aid in the research and support of children that suffer from this condition. One such foundation is the Avery's Angels Gastroschisis Foundation.

As a final message to mothers who are undergoing similar situation, I leave these words with you. "A car does not become disposable because the tires are punctured, we fix the tires and keep the car" Some cases are indeed worst than others but you are your child's greatest ally and greatest support, push through and let your faith in God, yourself, the medical team and especially your faith in your baby's will power, shine through in that moment when you believe your fears are about to consume you. You are not alone in you fight.