A year ago we were still in the hospital with Jadey Cate and she was fighting hard. She had just endured a marathon heart repair on January 14, 2015 to repair her very broken heart.
Jadey Cate was born with a form of TOF with pulmonary atresia and MAPCAs (Major Aorto-Pulmonary Collateral Arteries). She had no direct connection from her heart to her lungs. Her complex system of collaterals, that kept her alive, was also making her repair very complex.
After 12 hours of surgery our surgeon appeared, sweat on his brow, telling us how serious the situation was. Her heart had failed on the table as they were finishing her repair and she had to be placed back on bypass, much of the repair undone. The holes that were closed were now opened again.
She lived with a very broken heart and plumbing system for 3 1/2 years and her heart was not adjusting to the change. She was in very critical condition. The seriousness in his eyes when he spoke nearly broke me. This was an uphill battle, a near impossible battle. But our girl was a fighter and she had been a fighter all her life.
She fought to stay alive when she was abandoned as an infant. She fought to stay alive with an impaired immune system in a large orphanage full of kids.
She fought with every labored breath from her purple lips.
Like many of our heart warriors, Jade’s recovery was not routine, nor did she ever intend to follow the textbook. While she was winning some battles, others were just beginning. As she was coming off sedation we were starting to see her GI issues emerging. A combination of vocal cord paralysis and aspiration left her dependent on a tube to be fed. This grew into a sort of GI hell that lasted nearly 9 months for our little fighter. Much of it still remains a mystery, a combination of GI insult from surgery, heart failure, poor perfusion, medication intolerance, etc, caused literal torture for Jadey Cate.
Much of this time is painful to recall. We shared the details of our fight with some, but only those close to us knew just how bad it had become. One of the vital things needed to keep Jadey alive – food – was complete torture to her. We went through three hospital systems, multiple admissions, medications, formulas, sleepless nights. I researched until my eyes were bloodshot from looking at a computer screen.
Jade had multiple lines and eventually a special central line that kept her alive with just IV nutrution, no food at all. We were not offered any other solution at two of our home hospitals. We had decided we would not torture Jadey any longer, we would not feed her through her stomach tube. The IV nutrition (TPN) is not ideal and in the long term will cause liver damage, so we pushed for a transfer to one of the best children’s hospitals in the country. We would exhaust all avenues to find Hope for Jade even if it meant we had to travel 1000 miles away from home.
Even while at one of the best institutions, we still had to fight for Jade. Most of the physicians we encountered had never seen or treated a child like Jade that had not had proper medical care as an infant. Rarely will you see a child who has suffered for years from cyanosis (severe lack of oxygen) in the United States, it just doesn’t happen here because of our medical system. So we had to push for doctors to look beyond the obvious and dig deeper to find answers. As a medical professional myself I knew how to research beyond “Dr. Google” but even more so I wanted validation that I knew my daughter.
I am a firm believer that whether a mother grows her child in her belly or in her heart, God gives that mother a special intuition to know their child best. For months I had suspected certain issues with Jade as I watched her decline in front of me. We searched and searched for answers that remained a mystery. It was exhausting at times to advocate and to push for better answers, but I had to be a voice for Jade.
One of the simplest yet profound things I have learned is to trust the intuition I have for my children. I believe it is God’s way of speaking to us as mothers. In the end, many of my concerns and suspicions with Jade’s care turned out to be spot on. She had another open heart surgery and her world started to change. I never needed to say “I told you so”… it wasn’t about that. It was about hearing and listening to the voice God gave me within and advocating for my girl.
We would never have seen healing with Jade had I not been able to listen and advocate for what Jade needed. Our medical doctors and communities are amazing people. They spend hours pouring their lives into our children, and they do it well. But sometimes our unique children don’t follow all the rules or algorithms. That is when it is our jobs as Mamas (and Babas) is to lovingly speak up and insist on the very best care.
Jadey merely existed for 9 months of last year. We hardly got to know her beyond her pain. We now are watching her begin to live life. To experience the joys of being a kid. We even have a child who, after one year, can eat again without being in pain.
Weary Mamas out there, don’t give up. Speak up. There is Hope!
= guest post by Tara
Thank you for sharing your story. I’ve experienced this with my autistic son. Did you find someone to do the heart repair? A few years ago I helped a friend’s daughter find a surgeon to repair the same problem. At that time, the best were at Stanford University. I hope that your daughter will continue to progress along her healing road.
My son Aaron is 21 and was born with TOF/PA. Please let me know anything you are wondering about.