We learned of her rare condition during a routine ultrasound at 17 weeks. Her condition is whats called a Congenital Diaphragmatic Hernia, otherwise known as CDH. 1 in 2,500 babies are born with this condition and no one knows why. The survival rate for CDH babies is just over 50%.
Harper's CDH, in the simplest terms, means she was born with a large hole in her diaphragm. This caused all of the organs in her abdomen to rise into her chest causing crowding of her heart and lungs. Her liver, spleen, stomach and intestines were in her chest at birth causing her lung to be extremely underdeveloped on the left side and pushed her heart to the right side causing major pressures. One of the treatments to keep her alive following birth was ecmo, a heart and lung bypass machine, life support that performed the function of both her heart and lungs for more than 3 weeks. She was also on her breathing machine and ventilator for the first 9 weeks of life. Recently at 10 weeks old, she needed to be placed back on the ventilator due to setback in her health with a blood infection.
When we learned of her condition we knew we had to find the best possible care, but this didn't come close to home. Our home is in Western Massachusetts, roughly 90 to 120 minutes to Boston Children's where they specialize in the treatment of her condition, one of the best in the country.
Harper's family consists of her mommy and daddy and 3 active older brothers who are 12, 11, and 6. Needless to say, it's quite a balancing act keeping up with an active family in addition to travels 2 hours east to be with Harper.
Mom had to return to work to save FMLA time so that when Harper is ready to come home, she can care for her for the balance of leave. Harper's needs at home will not be that of a normal baby, likely coming home on oxygen and feeding tubes and requiring specialized, individual care.
We are a family of 6, including 2 full time hard working parents seeking support to maintain the needs for our little girl and her specialized care and hospital bills and travel costs associated with commuting back and forth to Boston as often as possible.
Any support offered is deeply appreciated by her and her entire family who pray daily for the day she will come home which is still months away.
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