Our beautiful little girl was born in August 2008 with a Congenital Diaphragmatic Hernia. This is a conditon that 1 in 2,500 children are born with. She had a 50% chance of survival. Basically what happens, is that there is a hole in the diaphragm which allows the stomach, intestines, spleen and sometimes liver to move up in to the chest cavity and the lungs are not able to form properly.
We were diagnosed in utero and so we were as prepared as we could be for a situation like this. Zoe was born in Portland and within a few hours of birth was placed on ECMO ( a heart/lung bypass machine). It was touch and go several months. We were able to hold her for the first time when she was 1 month old.
Her CDH (Congentital Diaphragmatic Hernia) was repaired at 1 month old and she remained in the hospital on various ventilators and breathing machines until she was 3 months old. As her lungs got a bit better her pulmonary pressures did not. She was diagnosed with severe pulmonary hypertension at just a few weeks old. She has been on pulmonary medication since birth and at 10 months old had a central line inserted through which she recieves a 24/7 infusion of medication. She is also on various other PH meds to help with her pressures.
All these medications have helped dropped her pressures slightly but they are still way higher than they should be. She is still on oxygen as needed, mainly whenever she gets sick. Medications for PH are incredibly expensive. One of the little pills she takes every day has a copay of $3000 a month, and that’s just the copay. We have really good insurance for her, but still would be stuck paying alomst $40,000 a year for one medication. Caring Voice has come through for us and helped us with the copay for this medication our daughter so desperately needs.
Today, 4 years later, Zoe is an effevescent little girl who charms everyone she meets. She has come so far, you’d hardly recognize her from the baby who was surrounded by machines and doctors at birth. She still has a long way to go though. We are looking at her being on IV meds for the rest of her life. We are so grateful to Caring Voice and the support they provide to help ensure that our little girl can get the medications she needs and live the fullest life she can.