Dear Mr. Sparks,
When we found out we were expecting, we were both elated and afraid. We
had lost a baby 4 months earlier at 12 weeks into the pregnancy. However
this pregnancy was very different; everything was picture perfect. It
was a textbook pregnancy. I had been taking prenatal vitamins before
conception. I stopped eating fast food, caffeine, and junk food. The
doctors assured us that all was well with the baby. At 20 weeks we had a
scare. A routine ultrasound showed that the baby was at risk of having
Down syndrome. We were thrilled when the amnio came back normal. The
doctors decided that the baby was healthy and further ultrasounds were
not needed. I felt uneasy, that something was not right. I asked for
another u/s, but my OB said that it was not medically necessary. I
prayed that I was wrong. I didn’t take any of the baby shower gifts out
of their boxes. These feelings I had I kept to myself.
At 35 weeks, I was induced due to decelerations in his heartbeat. I
cried tears of joy when I saw my little baby boy. He looked exactly like
his big brother. They let me hold him for one second and then grabbed
him from me when his eyes rolled back. Our baby was unable to breath at
birth. He was rushed to the NICU.
An X-ray revealed that Chris was born with a diaphragmatic hernia. This
means there was a hole in his diaphragm, which allowed his abdominal
organs to move into his chest. Our world collapsed when the doctors
explained the severity of our baby's condition. As a result of this, his
right lung was underdeveloped, and his left one was practically
non-existent. His heart was displaced over to the right side of his
Chris had surgery when he was 2 days old to repair his diaphragm and
bring all of his abdominal organs back in their place. I suffered spinal
leakage during a routine epidural and could not get out of my hospital
bed. It was a few days before I could see my baby. I will never forget
that feeling-- thinking that my baby was going to die, and I wasn’t able
to be with him.
The day I had blood inserted into my spine to repair the damage, I went
immediately to see Chris. Nothing could prepare me for that. He had
tubes coming out of everywhere. He had a chest tube, a stomach tube, he
was on a ventilator, and he had a central line. A central line is a
catheter inserted into a main vein near his heart.
Chris recovered nicely from his surgery and was off oxygen in 4 weeks
and ready to come home. We were thrilled and ready to move on with our
lives. However, Chris developed severe reflux. He would throw up more
than half his formula during each feeding. He was not gaining any
weight. He developed a severe cough due to the formula entering his
lungs, an aspirated pneumonia. We took him for an X-ray that revealed a
partial right lung collapse, and back into the NICU he went.
Christopher associated eating with pain, and he started eating less and
less. At this time he was 6 weeks old and had not gained a single pound
since birth. He was diagnosed as “failure to thrive.”
Three days after he was readmitted, his abdomen swelled up, and he
became very ill. An X-ray revealed he had necrotizing endocolotis. This
is death of the small and large intestine. Once again our baby was
critically ill. That night when we went to see him, the doctor was
waiting for us along with a social worker.
Once again my baby had tubes coming out of everywhere. He had a stomach
tube coming out of his nose, draining blood from his stomach. He also
had bloody stools. I had to consent to an emergency blood transfusion.
Another central line had to be inserted. Chris was put on 3
antibiotics, and he did not receive any food for 12 days, in order to
rest his intestines. Chris never ate again. When he was 8 weeks old he
had surgery to install a gastrostomy tube.
At this time a geneticist examined Christopher and determined that he
has a genetic condition. He has performed a blood test for chromosome
analysis that has come back normal. Chris had a muscle biopsy that came
back normal. However, the geneticist is positive that Chris has a
genetic condition. Further testing is presently pending. As of now,
Chris is considered to have an unknown syndrome.
After an additional 6 weeks in the NICU, Chris came home on March 1,
2002. His reflux is still an issue. He is on a feeding pump and
medication to control his reflux. He still has problems gaining weight
and refuses to take anything orally. He is now 4 months old. He is
finally starting to fit into a size 0-3 months. He just started wearing a
size one diaper. We are so thankful and happy to have him in our lives.
He is living proof of one of God’s miracles. Many people near and far
prayed for Chris. We are very thankful for that. Yes, we still have a
long road ahead of us. But each morning when I wake up, Chris greets me
with one of his big toothless smiles, and I know that everything is
going to be ok.
Written by Christopher's mom, Maricella Rodriguez (2002, New York)