Jonah, born 2011
We had a wonderfully and healthy first pregnancy and we were nowhere near ready to deal with what lay ahead shortly after delivering our son.
Jonah was born on October 4, 2011 at 7:58 a.m. He scored two 9’s on his APGAR tests and seemed to be thriving beautifully. He latched on and we even had so much fun counting his pees and poops throughout the night. The very next day early in the morning, we were four hours away from discharge when a pediatrician checks him and picks up on a heart murmur. A pulse ox machine was brought in and it determined that our baby was oxygenating in the 80’s. He was immediately rushed to the NICU where the neonatologist informed us that it could be his heart or lungs and it could be as small as a procedure or as big as heart surgery.
He was then transferred by a team of doctors and nurses to another hospital where they specialize in this area. That afternoon, we sat with a cardiologist as he informed us that our baby would need a 3-stage repair of open heart surgeries. He was diagnosed with Pulmonary Atresia with Intact Ventricle Septum.
Not knowing anything about his condition, we felt so ill-equipped to make any decisions. Not only were we grieving the loss of our healthy baby but we were in shock and disbelief about everything that was taking place. We had all the prenatal care necessary and no heart defect was detected.
Nine days after his birth, Jonah underwent his first open heart surgery which consisted of a BT shunt placement, PDA litigation, opening of the pulmonary artery, and patching of the pulmonary artery. The BT Shunt basically created a bypass to get the blood to his lungs for oxygenation. He did rather well post-op and was getting ready to be sent home, when he developed pulmonary hypertension and began to have issues with his saturation levels. He quickly seemed to be deteriorating and was hooked up to nitric oxide and started multiple medications in hopes of alleviating the pressures in his heart. Surgery was a heart rendering experience but this was exhausting, especially after seeing your baby recover so fast so well to then seeing them worsen instantly. A medicine by the name of Sildenafil was able to lessen his pulmonary hypertension and they were able to wean him down to a liter of oxygen.
After 6 weeks in the hospital, mind you being transferred back and forth to different hospitals given our insurance type, we finally got the okay to go home on oxygen, Sildenafil, and half a baby aspirin. Despite what some had told us, our son did so well once at home. He immediately started packing it on and grew stunningly. Developmentally he didn’t demonstrate any delays and in fact, our friends and family commented about how he seemed advanced for his age. Moreover, he’s such a happy baby who loves attention from people. He’s the baby who smiles when you look at him and make funny faces.
Jonah’s condition has been his whale as the bible account brings out. Yet, he has demonstrated strength and resilience beyond belief. He’s a fighter and the joy in our lives. We now await his next surgery, the Glenn Shunt, to transpire soon. Although we feel scared and anxious all over again, we leave everything in God’s hands for care and keeping. God has given us power beyond what is normal and we will continue to ask him for that strength to carry us through this next venture. As parents, we did a great deal of research and found a lot of CHD resources which helped us to understand our son’s heart condition and well as provide us with support and hope. At times we even felt like heart specialists ourselves. The ironic thing is we feel more comfortable discussing how a defective heart functions more than a healthy heart. Make sure to tap into those resources because in addition to family and friends, it can provide another layer of support and hope.
Story by Jonah’s mom, Jenny – California