When I was sixteen years old I was diagnosed with End Stage Renal Disease and was told I would not be able to carry a pregnancy until I had a kidney transplant. Around this same time last year I was beginning to have what my doctors thought were symptoms of stage five renal failure. But to all of our surprise, after many tests, I was actually seven weeks pregnant! I knew right away this was our miracle baby!
At my 12 week ultrasound, we found out we were having a baby boy and that he may possibly have gastroschisis, but it was too early to tell at that time. A few weeks later, at 15 weeks, I had a follow up ultrasound and it was confirmed that our baby did indeed have gastroschisis. Against all my doctors wishes, I proceeded with the pregnancy. Once I had seen his little profile in the ultrasound and heard his heartbeat for the first time I was in love and there was no way I wasn’t going to try to have my miracle baby!
I was monitored very closely with check ups and ultrasounds every two weeks. I was feeling great and my baby boy was growing big and strong! Around my 27 week check up and ultrasound, my obstetrician became concerned that my blood pressure was increasing so that day I was brought up to the birthing pavilion so they could monitor me more closely. After a few hours, they decided it would be in my best interest to stay overnight because my blood pressure was not stable and was continuing to rise. That one night stay turned into a five week stay where my baby boy and I were monitored day and night because I had developed preeclampsia.
On December 5, 2013, I had an early morning growth ultrasound where they found that my baby boy hadn’t grown in a week. That same day, I was also scheduled to start dialysis in the afternoon in hopes that it would help my baby boy to grow. The nurse’s attempt to get my dialysis started was unsuccessful and too much stress for me and my little one. Around 5 pm, I had another ultrasound to check on my baby boy and was told that I needed to have an emergency c-section.
At 6:39 pm, Zachary Michael, was born. At just 32 weeks, 1 day, he weighed 2 pounds 14 ounces and was 15.5 inches long. He came out flailing his arms and legs, crying and breathing all on his own! Our miracle baby was here! I was so proud and excited to meet him, but nervous and praying that he would make it through surgery. After he was born he was whisked away to have his silo attached and I finally got to meet him a few hours later. I was so in love!
Two weeks later, Zachary had another surgery. The surgeon had to remove a small portion of his small intestine and then connect it all back together and close up his belly. It lasted three long hours and everything was done successfully! A few hours after surgery, Zachary had a collapsed lung and had to be out on an oscillator to open his lung back up. He had lots of edema, all of his blood-gases were not coming back at normal levels and his stomach was very distended. The next three days were very hard, especially having the doctors explain to us why they were very concerned and that he might not pull through.
Zachary was the strongest little guy ever! He did indeed pull through and we got to hold him for the first time on Christmas Day, five days after his surgery! The next few days we waited for him to have a bowel movement on his own, but after nothing significant enough, we had to start giving him rectal irritations to get things moving. Finally things were flowing and we got to start feeding him! I was able to breast feed Zachary for a few weeks, before my milk supply dried up because of my own health issues. He then was able to get donor milk and was eventually switched to formula. He was eating a ton and growing big and strong!
On a daily basis Zachary spit up stomach bile, which we were told by the surgeon was normal for babies with gastroschisis. Sometimes his tummy would get distended and hard but it varied day to day. We were told this was also normal of gastroschisis babies. Zachary began taking all feedings by mouth, having 8-10 bowel movements a day, and was off all oxygen so we were told on February 21, 2014, Zachary would finally get to come home! Apart from the day he was born, that was the happiest day of my life!
Zachary thrived at home! He loved meeting his cousins, aunts, uncles, grandparents and friends. He was a social little boy! He was so full of life and love and happiness. I was one proud mommy!
One day while at home, Zachary started acting not like himself. He usually loved tummy time or snuggling on my chest, but this day he fussed when he was on his tummy. It was large and distended, but that was usually ‘normal’ for him. I noticed he wasn’t breathing normally so as his dad was walking in the door from work, I told him we need to get Zachary to the hospital immediately and I went out to start my car. When I came inside, my mom was on the phone with a 911 operator and Zachary’s dad was suctioning bile out of his mouth and nose. Zachary had aspirated on bile he spit up and stopped breathing. I began CPR as the ambulance arrived. They took Zachary into the ambulance and we followed them to the hospital. When we arrived they were still doing CPR on him. I held my little boys hand praying for him to be okay. After an hour and a half, the doctor told us there was nothing more they could do, and just like that our sweet baby boy was gone.
Before Zachary was born, my family, friends and I had never heard of gastroschisis. After all of the time spent with Zachary and his doctors, I have come to learn more about this birth defect and that it is more common than people know. As a mom to a gastroschisis baby, I feel as though it is now my mission to help educate and support other families who are expecting a baby with gastroschisis.