Dear Mr. Sparks,
Our daughter Clara was diagnosed by ultrasound at week 16 during a routine amnio. It was suspected even before that. She was born full term during January of 95. Her left sided hernia was repaired at about 6 hours of age. Even though much of her intestines were up in her chest, the hole was rather small and easily closed without a patch. Six hours later she was on ECMO.
Her "progress notes" (or lack of progress) from the NICU tell us of nursery stay. Along with her CDH, she had Hypertension, Pulmonary Edema, Cardiac Stun (Decreased Heart Contractions), Urinary Track Infection, Hemoperitoneum (massive abdominal bleed), PPH, Occiput hemutoma, Bronchopulmonary Dysplasia, and suspected GE Reflux. She also went through Morphine withdrawal after being on it for 30 days. To everyone's surprise, she came off of ECMO on her second attempt, 24 days after birth. Termination of her treatment was "suggested" at day 20, following her failed idle. Her vent settings were better than expected, and she came off the conventional vent after 7 days. She spent one day on the jet vent before she pulled the tubes out. About another month of oxygen. She came home on her second month birthday with standby oxygen.
We had a night nurse for the first month at home (her third month of life) who fed her with a NG tube. During the day she took the breast. Her night feeding formula was a concentrated Similac fortified with Polycose to boost the calories. We used breast milk whenever possible, also fortified with Polycose. She had Cisapride to prevent reflux, and also Aldactaside (sp?) was given twice a day in her vaporizer(I forgot the name of that device!) She had a "speech therapist" come in to work on her suck/swallow reflex that finally developed at about 4-6 months. She also had someone from Infants/Toddlers program come in to work on her motor reflexes. She was behind till about 6-9 months, but by 11 months she was walking.
We tried to give her as much breast milk to boost her immunity, and she had only 3-4 mild colds her first year. Her second year was just as good. We did keep her at home and avoided as much possible exposure to germs as we could during these first few years, but now she is going twice a week to day care. She sings, dances, speaks English and Spanish, and is a very happy, loving child.
We are very lucky, and we thank God every day for Clara. The doctors and the technology allowed her to live, but God gave her life.
Written by Clara's dad, Alan Knapton (Maryland)
Our daughter Clara was diagnosed by ultrasound at week 16 during a routine amnio. It was suspected even before that. She was born full term during January of 95. Her left sided hernia was repaired at about 6 hours of age. Even though much of her intestines were up in her chest, the hole was rather small and easily closed without a patch. Six hours later she was on ECMO.
Her "progress notes" (or lack of progress) from the NICU tell us of nursery stay. Along with her CDH, she had Hypertension, Pulmonary Edema, Cardiac Stun (Decreased Heart Contractions), Urinary Track Infection, Hemoperitoneum (massive abdominal bleed), PPH, Occiput hemutoma, Bronchopulmonary Dysplasia, and suspected GE Reflux. She also went through Morphine withdrawal after being on it for 30 days. To everyone's surprise, she came off of ECMO on her second attempt, 24 days after birth. Termination of her treatment was "suggested" at day 20, following her failed idle. Her vent settings were better than expected, and she came off the conventional vent after 7 days. She spent one day on the jet vent before she pulled the tubes out. About another month of oxygen. She came home on her second month birthday with standby oxygen.
We had a night nurse for the first month at home (her third month of life) who fed her with a NG tube. During the day she took the breast. Her night feeding formula was a concentrated Similac fortified with Polycose to boost the calories. We used breast milk whenever possible, also fortified with Polycose. She had Cisapride to prevent reflux, and also Aldactaside (sp?) was given twice a day in her vaporizer(I forgot the name of that device!) She had a "speech therapist" come in to work on her suck/swallow reflex that finally developed at about 4-6 months. She also had someone from Infants/Toddlers program come in to work on her motor reflexes. She was behind till about 6-9 months, but by 11 months she was walking.
We tried to give her as much breast milk to boost her immunity, and she had only 3-4 mild colds her first year. Her second year was just as good. We did keep her at home and avoided as much possible exposure to germs as we could during these first few years, but now she is going twice a week to day care. She sings, dances, speaks English and Spanish, and is a very happy, loving child.
We are very lucky, and we thank God every day for Clara. The doctors and the technology allowed her to live, but God gave her life.
Written by Clara's dad, Alan Knapton (Maryland)
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