Featured Child~ Claire



We found out Claire had CDH during our 19-week ultrasound.  We had never heard of CDH before, and it was only after we got home and looked it up on the internet that we realized the severity of it.  Claire's CDH was labeled as "moderate" (stomach and intestines were up), and no one really knew how she would do.  At 36 weeks I had to be induced due to pre-eclampsia.  Claire was born weighing 5lbs 8oz and surprised us all by pinking up and crying LOUDLY.  But she soon started having a lot of trouble breathing, so they intubated her and transferred her a few blocks away to the children's hospital.  She was able to remain on a conventional ventilator, and had her repair surgery at 6 days old.  They were able to do a primary repair laparoscopically without using a patch, but had to pull her existing diaphragm really tightly to attach it to the other side.  She came off the ventilator at 10 days old, and was able to go home after 22 days.  She came home on oxygen and drinking milk from a bottle.  She came off the oxygen at 6 weeks old, and was eventually able to breastfeed.

At her 1-year follow-up appointment the surgeon told me Claire might be developing scoliosis, but that it was "mild".  At her 2-year follow-up appointment we saw a different surgeon, who looked at her chest x-ray and also said the scoliosis curve was mild.  I noticed some asymmetry of her ribcage, but was told it was probably due to the CDH.  By her 3-year follow-up appointment last summer I was becoming concerned about noticeable curvature of her spine and the way her bottom left rib poked out.  The surgeon looked at the x-ray and agreed that the scoliosis was worse, but also noticed that her diaphragm had reherniated and part of her colon was coming up through the hole.  We were really surprised since she'd had no symptoms of reherniation.  The CT scan confirmed it, and she had surgery to repair it last October at age 3.  This time they put in a gortex patch, and were able to do everything laparoscopically again.  While in the hospital she acquired a C diff infection following the routine dose of antibiotics they put in her IV after the surgery.  She became severely dehydrated due to colitis and was in the hospital for 7 days.  We returned to the ER a few days later for a bladder infection.

Last summer we were referred to an orthopedic doctor about her scoliosis.  He did a full x-ray of her spine and measured the curve at 38 degrees!  It was difficult for the CDH surgeon to see how bad the scoliosis was from a chest x-ray alone because he was only seeing the top half of her spine.  The orthopedic doctor said the scoliosis was probably due to the tension on her diaphragm from it being pulled so tightly during her first repair surgery.  She began wearing a Boston brace for 16+ hours per day last November to try to keep the curve from getting any worse.  She will need to wear the brace until she is a teenager and stops growing.  But since she is so young and the curve is already pretty severe, chances are she will eventually need spine surgery.  We are trying to prevent this or delay it for as long as possible.

Claire will turn 4 years old next month, and you would never know she has faced so many obstacles.  She is very energetic and is always smiling and dancing and singing.  She has lots of friends and loves going to preschool.

To Read More about Claire   http://babyclaire07.blogspot.com/