This is the story of my son Joseph. When I was almost 19 weeks pregnant, my husband and I
found out via ultrasound that our son had gastroschisis. It came as a complete shock and surprise
because up to that point, we had no indication that anything was wrong with our baby. That day,
we were supposed to find out if we were having a boy or a girl, not that our baby would face the
fight of his life. Everything you hope for and imagine and day dream about since the moment
those pregnancy lines melt into the test are shattered in that instant.
We were scheduled for a follow-up ultrasound and a consult with the pediatric surgeon. The rest
of my pregnancy was spent in fear for my son’s life. I would dread every ultrasound and every
appointment. My heart was always heavy. I didn’t understand why this was happening to us. I
was suffering with the pain of what my son would have to endure, with so much unknown. From
19 weeks to 28 weeks, I went for an ultrasound every month. At 28 weeks, I would go every
week. My Wednesdays became “Ultrasound days”. At each of these appointments, they would
check the amniotic fluid levels, umbilical blood flow, the baby’s heart beat, movement, and
breathing efforts. Every other week, they would measure his growth. When the ultrasound wasn’t
reassuring, I would have a non-stress test. Once, I ended up having to go straight to the hospital
with preterm contractions.
The morning I turned 35 weeks, my water broke while I was sleeping. 16 hours later, our son
Joseph Baptiste was born weighing 5lb 13oz. He came out crying and that sound melted my
heart. He was rushed from the room and taken to the NICU to prepare for surgery. Within an
hour, he was in the operating room. Around 1am, the surgeon came to my hospital room to
explain how the surgery went. My son was born with all of his small and large intestines and the
lower part of his stomach out. There was too much swelling to place everything back inside with
a primary closure so the surgeon had to place a silo. He also had a central line (called a Broviac)
placed in his chest and threaded into his neck and down into his heart. This central line would be
where he would get his TPN to sustain him while he couldn’t eat, the pain medicine, and all the
antibiotics he was on. Once he was settled back in the NICU, I was finally able to see my son.
The next 12 days were the worst days of my life. That is how long my son had the silo. It took 8
days to get his pain under control. He ended up on a continuous Morphine infusion but when his
body got used to the Morphine, they had to switch to a Fentynl infusion in addition to Versed.
His silo popped off twice; the second time was on mother’s day. The surgeons ended up having
to suture the edges to his abdomen. My son was such a fighter that the surgeons had to
chemically paralyze him to get him to stop moving; he would pitch little fits and plant his feet
and push his whole body up in the bed but his silo wouldn’t move with him so it would tug. I
would see him trying to cry but he couldn’t make any noise because of the breathing tube. All I
could do to console him was stick my hands through the little holes in the isolette and stroke his
forehead and his feet. At first, he couldn’t stand being touched and it would irritate him when I
would try. Eventually, I found that stroking his forehead a certain way would calm him down.
He had to make a trip back to the operating room after his silo came undone the second time
because his Broviac central line had migrated up his neck (when the tip is supposed to sit in his
heart). The surgeons took that one out and placed a new one, this time using his right internal
Finally, after 12 days with the silo, the surgeons were able to close his abdomen. It was such a
tight close that he had to remain on the vent for 21 days. It was 19 days before I could hold him
for the first time. It took a whole team to get him from the isolette into my lap because of the
breathing tube and all the other lines. Holding my son was the best feeling in the world,
especially after waiting for so long. I could finally kiss his head and comfort him like I’d been
yearning to. We really noticed him turn a corner once we were able to hold him. At 3 weeks old,
he was able to be taken off the vent and breathe on his own.
About a week after that, Joseph had some heart problems. One night, while he was sleeping, his
heart rate went into the 220s and the doctors couldn’t get it under control. Eventually, they found
some medicine that seemed to work. A couple days after that, we found out that Joseph had
become septic and developed a late onset Group B Strep infection in his blood. The infectious
disease specialist ordered a lumbar puncture to test for meningitis (a complication from the
infection). Unfortunately, both punctures produced bloody, not clear, cerebral spinal fluid so
Joseph was put on more antibiotics to treat for meningitis and sepsis.
When we were finally able to start feeding Joseph, he started off getting 5cc every 3 hours. After
2 days, they increased it to 10cc and then another day to 15cc. The goal was to go up by 5 every
day to every other day. He was stuck at 15cc for longer than anticipated because he had such a
hard time tolerating that amount. Feeds became so frustrating because he would fall asleep or
resist sucking and we really had to struggle with him to get him to eat. He came up with all these
tricks to keep from eating – he would suck and then spit it all out, or he would put his tongue on
the roof of his mouth to prevent anything from going in. It took weeks to get him up to full feeds
(which amounted to cc 20 times his weight in kg). I wasn’t able to breastfeed at all while in the
hospital so the whole time, I pumped around the clock to establish and maintain my milk supply
in the hopes that eventually Joseph and I would learn how to breastfeed. I am so glad that I
persisted even when I wanted to give up because there is no greater feeling than your child
nursing and staring deeply into your eyes and sometimes smiling (which makes a mess and is so
After 6.5 weeks in the hospital, we were finally able to bring our son home. He adjusted to home
life smoothly and has been such a wonderful baby. At 3 months old, I noticed that the site on
Joseph’s chest where his central line was hadn’t healed completely and was draining fluid. I
could feel a lump in his chest. I brought him back to the pediatric surgeons and found out that a
piece of the central line was still stuck inside him. I had to schedule his 5th surgery to have it
removed. Fortunately it was a day surgery and I was able to bring my son home the same day.
He has recovered nicely.
Even though we’re home, Joseph still needs continued care. We have frequent visits to all of his
doctors and he has a home health nurse and occupational therapist. We just found out that Joseph
will also need a physical therapist because his body is so stiff and he’s having a difficult time
flexing at the waist.
With everything we’ve been through, looking at Joseph, you’d never know! He is so happy all
the time! He is such a blessing to everyone he meets and he’s my gastroschisis miracle!