Failure to Thrive- A Hirschsprung’s Disease Story

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Hirschsprung’s Disease is a rare congenital disease that affects 1in 5,000 births.  Babies born with Hirschsprung’s Disease are missing ganglion cells, the cells that help move waste through the intestines. While Hirschsprung’s disease can be hereditary, often it just happens randomly. Most of the time it is diagnosed at birth or shortly there after when the newborn does not pass the meconium (the first poop after birth).  But, this is not always the case.

Faith Beatrice was born July 16th, 2016 @ 5:19am.  She weighed 6lb 9oz, and was absolutely beautiful. She had a head full of black hair and good strong lungs.  A healthy baby girl.  Ten fingers, ten toes. Passed her hearing test. Just perfect.   I even asked the nurse, “did she pass her meconium?” She responded that she did.  I remember thinking that asking about her meconium was probably an odd question.  Now, in hindsight, it seems more like foreshadowing of what was to come.  I had never heard of Hirschsprung’s Disease so it’s not like knowing she passed her meconium was a relief that she didn’t have this condition. We left the hospital, the next afternoon with our beautiful little girl none the wiser.

Something Just isn’t Right

Every parent of a newborn knows that sleep is a huge commodity. One day when Faith was about 3 weeks old, she woke up early like she normally did. But she didn’t want a bottle and shortly went back to sleep. She slept for about 4 hours. That was abnormal. When I checked her diaper it was dry. My mommy alarm went off. I called her doctor immediately. It was roughly 1:30pm. When I called, the nurse I spoke to showed no concern, and simply said that they did not have any appointments left for the day, and I could bring her in to be seen at the clinic. Um no! My 3 week old was not eating or peeing!! I called another pediatrician in town and they saw her right away.

Immediately an ambulance transported us to the closest children’s hospital to treat Faith dehydration. The lesson here folks is that you MUST advocate for your child. You are their voice. If it doesn’t seem right to you, then keep fighting until you get answers. This was the first time I had to advocate for my child, but it definitely would not be the last!
We were hospitalized for about a week and left with no diagnosis. Basically, they thought she had a feeding issue. They did not seem overly concerned about her lack of poop,so she was given suppositories to help her go. I saw a lactation specialist, and learned some feeding techniques. Faith was on an IV and was hydrated. But that was about it.

Failure to Thrive

When we returned home, Faith’s nurse practitioner was concerned with her lack of weight gain. She referred us to early intervention, and they sent us to an occupational therapist. She also sent us for a barium swallow test. The swallow test only showed that she was full of poop. There was nothing wrong with her swallowing reflexes. OT was a flop too. Everything they showed us worked for a day or two but that was about it. We were sent to see a GI doctor. There they tested her stool and found she had blood in it, which could mean a milk protein allergy. She was put on a Elecare, a special formula that we had to get from the pharmacy.

Through all of this, Faith failed to gain weight. This went on for about a month and a half. She weighted 6 lbs 9oz and birth, and now at 2 1/2 months we were struggling to get her above 7 pounds. Finally, her nurse practitioner sent us to Vanderbilt Children’s hospital where were admitted for failure to thrive. We were beyond scared. We didn’t know what was wrong with our sweet girl, but knew there was something. All we wanted was answers…

Continue reading Faith’s Journey

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