Below I have arranged the highs,lows, and milestones to Walter’s Tetralogy of Fallot w/ Pulmonary Atresia Journey. There are plenty of posts and moments in between, but these are his (and our) highlights).
Diagnosis: (May 31,2014)
Dan and I found out that our son has a rare congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia (PA dx later) at 20 weeks gestation. There were a lot of unanswered questions and unknowns surrounding his diagnosis – mainly what lies ahead: for surgeries, hospital stays, and quality of life. We are constantly learning and use this blog to share our experiences, Faith, and resilience in the face of life’s trials with CHD which will require open heart surgery soon, if not immediately after birth.
We still have many unanswered questions and unknowns that lie ahead, but for now we are comforted in a diagnosis, a treatment, and a faith, that God has provided us a mission which we are unshakably set on carrying out: raising Walter with the same strength and Faith we have come to know.
Walter David means “Beloved King of the Army” and we think our little warrior is just that.
Amnio: GOOD Results from Our Amnio
We chose to have an amnio due to concerns of possible genetic defects. Walter’s ToF ultimately showed no tie to chromosonal abnormalities, and ToF (with Coronary Artery abnormalities and Pulmonary Obstruction) remain his sole diagnosis.
Second Opinion (CHOP): CALIFORNIA: Born and Bred
Due to questions surrounding the size and nature of Walter’s pulmonary valve, there were some questions as to how soon after birth he would be needing corrective surgery or an initial shunt. Because we were initially being seen at DC Children’s National, where there were not good delivery options nearby, we took a day trip to Children’s Hospital Philadelphia for a consult. They are a premier program and have an incredible option to delivery mere feet away from Cardio-Thoracic Operating rooms for neonates.
We were incredibly impressed with their Fetal Heart Program, but it ended up not being a need for us. As military life would have it, we were headed to California (near my family) and Walter worn be born, and have surgery out in the LA area.
Birth (October 1, 2014): Our Life with a New Life
We were overjoyed with how well Wally was doing from the start: stable. At birth, we heard his cries as the NICU team relayed that our little boy was stable. He was not intubated (no breathing tubes) and was acyanotic (not “blue”, but the “pink” we had prayed for). Dan cut the cord, and I was able to hold my son just long enough to kiss his forehead, before Walter was whisked away to the NICU for continued monitoring and an examination by his cardiologist.
We had some feeding issues, but picked up breastfeeding in the next week (bottle immediately), and went home after four days in the hospital. Life was perhaps as “normal” as we could imagine (though riddled with doctor appointments).
Open Heart Surgery #1: (November 26, 2014) – 7 weeks old
Emergency surgery, failed complete repair resulting in BT Shunt
- Pulmoary Atresia diagnosis
- Left Anteriory Descending Additional Coronaries
- Necrotizing Enterocolitis (NEC) complication, additional ICU and hospital time, NPO/TPN
Blue Lips and Helicopter Rides – emergency transport
Surgery for 11/26/14: Gratitude – Pre-Op
A Fix for Now – Post-Op
Thankful for Life – More details post-op as well as post-op pics and descriptions
Progress and Setbacks – Nec/NPO/TPN
Open Heart Surgery #2: (September 3, 2015) – 11 months old
- Dr. Starnes successful repair — no conduit for now!
- Surprise transatrial non-standard repair (via the tricuspid valve)
Walter is 1!
Walter is 2!