By: Dr. Megan Foley, Ryan’s mom
Life is what happens to us while we are making other plans. This describes our journey with our son Ryan perfectly. We found out about part of Ryan’s health issues at our 16 week ultrasound. At that time he was diagnosed with a complex congenital heart defect- Tricuspid atresia. After consulting multiple specialists we were told this was repairable with a series of 3 surgeries. We met with a cardio-thoracic surgeon and he showed us a healthy little boy running down his hallway that had the same issue and had completed all 3 surgeries. We knew the road would be difficult but did not imagine what was to come.
Ryan William Foley was born after a planned induction at 6 lbs and 21 inches. He was immediately taken to the NICU and intubated and on day 2 had his first cardiac catheterization. He proceeded to pull out his own ET tube, an indication of his tenacity and strength to come. He spent a month in the NICU thanks to a case of necrotizing enterocolitis. While there he was found to be low tone with a large head (thanks to his Irish roots). An MRI revealed partial polymicrogyria (abnormality in brain formation). The neurologist could not tell us what this would mean for Ryan, anything from mild intellectual disabilities to severe intellectual and physical disability with seizures and early death. Not helpful but also left the window open for all possibilities.
Ryan and the family had a long road ahead of us. He spent about 6 months of his first year in the hospital with my husband and I splitting days and nights with him and trying to work full time. Finding daycare was difficult due to his level of care needed and the amount of time he was in the hospital. Over the following 5 years, we pursued Early Intervention, 6-8 hours of physical, occupational and speech therapy weekly and endless doctors appointments. Ryan had 4 instead of the original 3 planned heart surgeries. At one point he developed pulmonary hypertension which threatened his further care. The additional heart surgery was proposed by the cardiologist. At this point I was several months pregnant with our second child. In an effort to be educated I asked the doctor what would happen if the surgery didn’t work and was told we would be out of options. This lead to some panic and a very teary ride home. Thankfully the surgery was a success and he could finish his series. Due to his low oxygen levels we would have oxygen tanks in the house for much of those 5 years. At about 2 years of age he went on a hunger strike. After trying many options for calorie intake we were down to discussing a G tube. After discussing choices, our pediatrician gave us a short term options for TPN (total IV nutrition) and we gave it a try. This was the key to take the pressure off feeding and gave a treatment until Ryan started eating again (3 months). He had his last surgery at 5 years of age, in 2000. Once he had normal oxygen levels his development progressed. He was able to start walking and participating in schools.
Ryan has persevered despite his difficult beginnings. He is now 22 years old and is facing new challenges as he has aged out of the school system and we are looking into future options. The neurologist’s original description of Ry’s future was correct in many ways. He continues to have severe apraxia (difficulty with speech) and moderate intellectual disabilities. His heart remains stable and we are down to every 2 year rechecks. We don’t know what will happen with his heart in the future as his surgery was developed 40 years ago and the first children to have it are just reaching their forties. It has been a group effort of our doctors, therapists and family support to get him here. We now have 4 children and a very busy life. Little did we know after the joy
of a positive pregnancy test the difficult road we would be on.
