CDH International’s featured patient of the week is CDH survivor Isabella Johnson. Isabella’s mom, Breanna, had this to share with us:
“Isabella was diagnosed with left sided CDH when I was 20 weeks pregnant with her, we were so terrified when the OB doctor said that he could not deliver our baby and that she might die. We were referred to maternal fetal medicine a few hours from where we live to further evaluate Isabella while I was pregnant with her and prepare for her delivery there. None of the hospitals where we live had a NICU or ECMO.
Isabella was born when I was 37 weeks pregnant. When she came out she cried for about 2 minutes while they were wiping her off. Moments later they intubated her, started placing IV lines, and a suction tube into her stomach. She remained stable so the doctors felt comfortable enough to do her CDH repair surgery 4 days after birth. The surgeon first attempted a laparoscopic procedure, they made two small incisions on the upper left side of her back. When they went in laparoscopically they saw that there were more organs in the chest than they initially expected so they decided they needed to do this surgery from the front. They made a larger incision on the left side of her abdomen below her ribs, where they moved her stomach, bowels, spleen, and half of her liver from her chest. The whole in her diaphragm was small enough that they didn’t need to use a patch, they stitched the muscle together and a few stitches around some ribs to hold the diaphragm closed.
Isabella was able to be extubated the day after surgery and placed on a high flow nasal cannula. She amazed everyone at how well she had done this far. She was showing us all that she was a fighter and she was here to stay. I finally got to hold her for the first time the evening after surgery. A few days later they removed her stomach suction tube and she got to have some breast milk for the first time. She was doing so well, they started to increase her feeds and she was just so sleepy and trying to heal she couldn’t stay awake long enough to eat. At that point she had to have an NG tube put in so that she could be fed but also rest. She had the NG tube for about 4 or 5 days then the doctor decided we could try without it to see if she is able to eat like she should and gain weight before we go home. We worked with her for about 2 days trying to stay awake to eat and she did it with mommy and daddy’s help she showed them she could do it so we finally got to come home. She was removed from her high flow nasal cannula about 3 days before we got to go home.
Isabella spent a total of 19 days in the hospital. She did have a few episodes where her sats dropped when she would get choked on some large spit ups, but she was able to recover from them fairly quickly. She is such a strong little girl! She is now 10 months old and doing absolutely amazing! You can barley even see her scars they healed so well. She still suffers from some GERD but we are keeping it under control with some medication and seeing a GI specialist. She also follows up with her pediatric surgeon every 6 months and they’re always pleased with how well she continues to do.
