On June 3rd, 2019, we were devastated to find out at 26 weeks pregnant, that our son, Theodore, was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). This is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. Hypoplastic left heart syndrome is one of the most severe types of congenital heart defects that is also known as “half a heart”. ‘Congenital’ means present at birth. Because a baby with this defect needs multiple open heart surgeries or other procedures immediately after birth, ‘HLHS’ is considered to be a critical congenital heart defect (CCHD).
My husband and I had cardiologist appointments almost every week following the heartbreaking news of our son’s condition. Although ‘palliative care’ was a strong suggestion, it was the furthest ‘option’ in my mind. We traveled an hour away from our home, to Rochester, in order to seek care from a team of doctors that specialized in ‘HLHS’ cases. On July 15th, 2019, after spending a full day, in and out of consultations, the doctors had found yet another major complication with Teddy’s already critical condition. We were told that Teddy also has what is called an “intact (or closed) atrial septum“. This means that Teddy’s complete premature closure of his foramen ovale further hindered his ability to get oxygenated blood distributed to his entire body, and caused pulmonary congestion in utero. To put this in perspective, HLHS is reported to occur in approximately 0.016% of live births in Canada and the United States, and then within that small ‘population’, only 1% of the HLHS cases have an “intact atrial septum”. Extremely RARE. This new ‘diagnosis’ had caused our case to ultimately be declined by the hospital in Rochester, NY. We essentially had to “start from scratch” and begin the process of ‘getting approved for treatment’ all over again, this time, from a new specialized hospital about 4 hours away from our home, in Pittsburgh, PA. This was an extremely emotional hit, as the more recent words spoken over our son’s case by medical professionals were: “we do not have solutions for this type of diagnosis anymore; we just have choices, to prolong the inevitable: death.” …As Teddy’s Mother, I refused to accept that statement & those words took no grip on my heart! With the support of my amazing Husband and family, we prepared for a whole new round of consultations in Pittsburgh…
By the Grace of God, Pittsburgh accepted our case, and we traveled there on July 31st, 2019 to officially meet the enormous team of medical professionals that would be collaborating to save our son’s life. Due to the ‘increased severity’ measured by doctor’s standards, they spent the remaining four weeks of my pregnancy brainstorming amongst multiple teams about the execution of a very unique “birth plan”. The “birth plan” that was finally decided upon had only been executed twice before in the entire history of their Children’s Hospital… Theodore would be their “lucky number three”…
The hospital had made a big exception for us by transforming one of their children’s operating rooms to specially accommodate my cesarean section. They brought-in obstetric doctors and nurses from the Women’s Hospital across town in order to care for me at a facility that was only geared toward children. The surgeons deemed this as a definite necessity, as they were confident that if I had a “typical c-section delivery” at their women’s hospital, approximately 20 minutes away, our son would NOT be able to survive the ambulance ride over to the children’s hospital. Theodore literally needed to be delivered “right next door”, only one room over, from their specialized cardiac ICU surgical team. It was an “all hands on deck” scenario, with multiple teams of doctors and nurses on-hand and scrubbed-in, ready for our son’s birth… The different medical teams needed to all be available at the same time because the hospital had rehearsed multiple “game-plans”. They would be ready to execute the most optimal ‘plan’, after quickly assessing our son the very second he was born. We felt extremely grateful that God allowed such an elaborate and RARE plan to formulate in our son’s favor.
Ourselves, along with our extended family, traveled down to Pittsburgh on Thursday, August 29th, as I was scheduled to arrive at the hospital the next day for “check-in” by 6:30AM. Theodore was born on Friday, August 30th, via a scheduled cesarean section at 9:01AM; he shocked us by weighing-in at a whopping 7.5 pounds (even being delivered 2 weeks early)! I was only able to get a quick 2-second “glance” at him through the clear operation curtain draped over my stomach. Due to Theodore quickly turning blue and having a very low oxygen saturation, they had to rush him immediately to the next room; HIS operation room… “The plan” that was quickly chosen for our son was to perform a complete ‘open heart surgery’ just MINUTES after his birth. Teddy endured an atrial septectomy. This is a procedure where they remove the wall between the left and right atria of the heart. An atrial septectomy allows blood to freely flow from the left side to the right side of the heart, bypassing the non-functioning left ventricle. This in turn reduces the pressure that was building up in Teddy’s lungs and allows the right ventricle to pump oxygenated blood to the rest of his body. It was later confirmed that upwards of 50 medical professionals of a great variety were directly involved with our Teddy Bear’s birth!
There are no words to describe the emotions that were involved on our son’s “Birth-Day”. I was physically paralyzed from the chest down, strapped to an operating table, while my son was quickly taken out of my stomach, only to be strapped to his own operating table in the next room over… My husband & I had never prayed so hard in our entire lives; while I was still being stitched-up from my surgery, we held each other’s hands and prayed so hard for Teddy’s life to be spared. Knowing that they only quoted him a 10-20% survival rate, my heart and mind was racing as my insides were still being “put back together”… Within Theodore’s very FIRST WEEK of life, he endured an open heart surgery and four other major procedures; two of which were back in the operation room. No precious little newborn should have to endure so much pain and confusion. Unfortunately, we’ve learned that the initial open heart surgery Theodore courageously overcame will not be his last. He still has a minimum of three future open heart surgeries in his horizon (The Norwood, The Glenn, & The Fontan). These three following surgeries take place with the intention of pushing-off the need for a heart transplant as long as possible …
After Theodore was born, I had to be transported to the women’s hospital across town in order to properly recover from my surgery and be monitored by the correct staff. Although this “Momma Bear” pushed her limits, by God’s Grace, I was very excited to be discharged just one-day post c-section, in order to go back to children’s hospital and physically see my little “Teddy Bear” for the first time! (Face-Timing my newborn son for the first 28 hours of his life was simply pure torture). Every day brought about new and scary challenges for myself, my family, and mostly my beautiful son. My husband and I remained in Pittsburgh from August 29th-September 6th, where we spent most of our time in Theodore’s Cardiac ICU room. There is usually a minimum of 2-3 nurses in his room at all times, and up to 15-20 doctors who ‘round’ on his case together, every single day. We then decided to travel back to Buffalo, NY to spend three nights back at home in order to take our 4-year old daughter, MacKenna, to her first day of school. While home, reality was setting-in, as we were forced to create a very detailed schedule with the help of extended family, regarding how to “juggle” both our little girl back home in New York, and 2-week-old son in Pennsylvania. Having to “choose” between your children is an absolutely terrible feeling; my “mother’s heart” is in constant turmoil: excited to see my newborn, but always dreading saying good-bye to my precious preschooler for almost a week at a time… This excruciating cycle of leaving one child behind in a different state is projected to last for months on end…
Although the ‘facts’ surrounding Theodore’s condition had only worsened since his diagnosis on June 3rd, by the Grace of God, my Husband and I had been submerged deeper and deeper in God’s peace… As Theodore’s Mother, I have grown closer to God than I ever have before, and hold steadfast onto His promises. I believe that our journey will eventually come “full circle”, and I try to remain EXCITED for what the Lord has in store for our future. Please pray with me, for God’s will to be done in Theodore’s life. I declare that my son’s heart IS healed, and IS reconstructed, and IS made whole. It’s hard, but I choose to fight FROM victory, instead of FOR victory… (Isaiah 53:5)
We had named our son ‘Theodore’, meaning “God’s Perfect Gift”, well before we even learned about his heart complications. God’s perfect gift for us IS our son, ‘Theodore’, because James 1:17-21 says: “every good and perfect gift cometh from my Father above”. Thank you, from the bottom of my heart, for continuing to stand in agreement with us, that “no weapon formed against Theodore shall prosper, because he is a child of God” (Isaiah 54:17). I have learned that it is time to be conscious of Jesus’ finished work at the cross, and declare that “THEODORE IS ALREADY HEALED”, and I’m simply standing on the victory ground that has already been given to us! I am still looking forward to seeing God’s ‘sneak-attack’ in Theodore’s earthly battle. Although the medical teams predict an extremely long road ahead, filled with many more surgeries and procedures in the upcoming years, I genuinely choose to TRUST GOD & REST IN HIS PEACE. Somehow, God loves Theodore even more than I do, and I know He will see him through every major obstacle… We ask that you continue to THANK GOD in advance with us for Teddy’s miracle, because it is DONE, in Jesus Name. Please subscribe below or check back on this site to stay up-to-date on Theodore’s progress.
God is GOOD; all the time…
–Love, “Momma Bear”
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FALLING RIGHT SIDE UP 