My Sweet Layla Rose, who was born full term, was born with preexisting conditions that were not detected during my pregnancy. At the time of birth, Layla experienced heart failure due to left to right shunting in the setting of a CAVC (complete atrioventricular canal defect) and PDA which is the vessel that allows blood to go around the baby’s heart before birth not closing after she was born. I also learned that Layla had Congenital Heart Disease (CHD). Soon after we detected the CHD, it was also detected that she was born with an absent T-Cell. What this meant was Layla’s immune system was “missing” or not functioning properly. In less than 48 hours, I found out that the two major systems in her little body were not functioning as they should. Consequently, the initial shock from hearing that my first child may not survive a few hours, let alone the lifetime I dreamed about, caused me to end up in ICU for my own set of complications. Despite the preexisting conditions, we were allowed to go home after 10 days of being hospitalized. Shortly after bringing her home, things immediately turned for the worse. Layla’s lungs collapsed due to the amount of fluid her heart was pumping into her lungs.
A parent’s worst nightmare is trying to rush your child to the emergency room and not knowing if you are going to make it there on time. By the time we reached the ER at NYU Langone, Layla’s oxygen levels were dropping, and both her heart rate and blood pressure were unstable. When they took her out of my arms, she was already blue and purple in her face. I watched through the glass door as they tried to stabilize her. In the middle of code blues, Doctors, Nurses & Health Aides running in and out, shouting and complete chaos, I stood there praying that I would be able to hold her again. She was immediately intubated and taken to the Congenital Cardiovascular Intensive Care Unit. As a result of her lungs collapsing and heart failure Layla was admitted to the Unit. The next day I met with her initial team, where I was told she needed open heart surgery to repair the heart valve, but they could not perform the surgery because Layla was not stable enough or big enough to withstand a lengthy surgery. The odds were against her, but as a parent I made the hard decision of consenting to a PDA ligation and division/vascular ring division to help the amount of fluids being pump to the lungs.
After the PDA Ligation surgery we needed to tackle Layla’s immune system. While Layla’s body was recovering from the procedure and ‘’shock’’ of being admitted due to CHF versus clinical sepsis, we quickly began to communicate with Mount Sinai Allergy and Immunology Clinical and Laboratory Immunology of Pediatrics. We met with Professor Charlotte Cunningham Rundles MD, PHD. She explained that Layla Needed a Bone Marrow Transplant or Thymus Transplant. Not only did she need Heart Surgery, her lungs were not functioning properly, and I had to plan for a transplant to save her life. I made the decision to transfer Layla to Columbia Children Hospital of NY to begin the process of the Bone Marrow transplant to save her life.
As we begin to find donors, prepare her chemo plan and schedule a start date, Layla had another lung relapse due to her CHD. At that moment I asked for a team meeting because my heart was not convinced that the bone marrow was the best choice for Layla. A member from the Cardiac team told me Layla’s survival rate for the heart surgery was a high chance even though she was just coming in at 5lbs 2ounces still at 3 months of age. When I asked the bone marrow team Layla survival rate they couldn’t give me a clear answer. She was still classified as “Critical”. They said it was 50/50 chance she would survive the transplant and 33 percent chance her body would even accept the donor t-cell and not rejecting causing fatality. As I sat there hearing my daughter was not going to make it, I still had to make a decision to give her the best chance of survival.
Layla best option was a Thymus Transplant. The thymus is the system that produces the t-cell to fight virus and bacteria. But the only hospital in United Stated that performs this transplant is Duke Hospital in North Carolina. The Thymus transplant is still considered “clinical trial” with great success stories. Everyone in that room told me that I could not give her the best option, that Layla would not make it to Duke because of Critical diagnosis. Not only was Layla born with the preexisting conditions, she was also born with Coloboma in both eyes, 95 percent hearing lost and congenital choanal atresia. With all of this information in front of us, we finally discovered she was born with CHARGE syndrome (The name “CHARGE” was a clever way (in 1981) to refer to a newly recognized cluster of features seen in a number of children. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene causing CHARGE syndrome has been discovered. The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness.). We finally had the answers we needed.
As we got closer to the start date to begin the bone marrow, I begin to do my research. I communicating with other parents and doctors, I met via a Charge Support group. In that support group, a mother suggested I contact Duke University directly. She also encouraged me to fight for the best option for Layla and not to take no for an answer. She gave the direct personal number to the doctor at Duke that does the Thymus Transplant, after our conversation via phone, I made a decision an put the Bone Marrow Transplant on Hold, repair the heart, give Layla lungs a chance to repair itself after in collapsed twice and also work on Layla weight. It was the hardest decision I had to make. Not know the outcome but trusting God has a bigger plan. We transferred Layla back to NYU Langone, where on March 22, 2017, Surgeon Ralph S. Mosca MD of Pediatric and Adult Congenital Cardiothoracic Surgery operated Layla. Seven hours later, bypass machine and 7 cups of Coffee, I see her being brought back from the Operation Room.
The Heart Surgery was a success. He was able to repair the heart valve and close the heart murmurs. Layla will still need one more surgery in the future to clean the valves, her heart rate and blood pressure stabilize to normal function and Layla was extubate. We were finally able to prepare to go home. Finally after five months of being hospitalize, two heart surgeries, multiple intubations, fevers, viruses, two major lung failures and one heart failure, I can actually take Layla home (of course with a lot of restrictions and a lot of at homecare). On April 8, 2017, we were finally home and right away began to work on the requirements to get her present to the Duke Panel meeting April 28, 2017. After three months of Doctors Appointments with ENT, Ophthalmology, pulmonology, and her team, Layla was accepted to Duke University On July 3, 2017; the day before my birthday and what a gift that was!
In eight months, I have had to make decisions that I couldn’t even comprehend. I studied and researched Layla’s condition and advocated for the best doctors and care for my daughter. It’s very hard to hope for the best and expect the worst, and now we face another battle ahead. I’ve had to quit my job to be able to care for her around the clock and also learn how to manage with a child with all of her complications. With Layla being accepted to Duke University, we will have to relocate to North Carolina in October and start this process all over, without the full assistance of insurance or other monetary resources. I am sincerely asking for ANY assistance available to help us with this transition, medical bills, room and board. This experience has been more than humbling, but I know that we have only made it this far because of my faith and the people that God has placed in BOTH of our lives throughout these past few months. I cannot thank my family and friends enough for their constant support and prayers through these trial times. I want to thank all of you in advance. And if I never directly speak to all of you, just know that every day Layla takes a breath is God’s way of me thanking all of you for this blessing he’s given me. Together, with your support, I hope to return back home with yet another success story to share about my sweet Layla Rose.