Xander Strong

Written by Mom, Shelby

Xander was born on August 23, 2021, and is our rainbow baby. It was a high-risk pregnancy because his older brother was stillborn a year prior. We were followed closely throughout the pregnancy by a Maternal Fetal Medicine doctor, as well as the rest of the team. There were plans put in place to avoid complications that may have occurred with his brother, as well as frequent anatomy scans throughout the pregnancy. We received the diagnosis of IUGR (Intrauterine Growth Restriction) during the pregnancy, and we understood there were further complications that could occur from this, but there were not any major concerns found from the anatomy scans and tests that we had done due to the diagnosis. As we neared the end of the pregnancy, I developed severe pre-eclampsia was hospitalized a few times, and was followed even closer due to this added complication. We spent most of our days at the doctor’s office during the last trimester, and precautions were taken in case Xander were to be born early. 

I went into labor at about 35 weeks and Xander was taken to the NICU immediately following birth. I was in the hospital for a few more days to take care of my condition, and he remained in the NICU a few floors down from me. The doctors in the NICU examined everything closely, especially because of the IUGR diagnosis, but did not have any major concerns besides getting him to feed before going home. At about 12 days old, it was discovered that he may need an echocardiogram done because he was not getting enough oxygenated blood flow throughout his entire body, especially his legs.

We were emergency transferred from the NICU to Children’s Hospital Cardiac ICU. As soon as we arrived, the teams of doctors and specialists were hard at work to determine what Xander’s tests were showing and what the plan would be moving forward. It was determined that his PDA was not closed, and he would be put on medicine to close it up, but he also had coarctation of the aorta and a bicuspid valve in his heart. It was explained that he would need surgery to repair the coarctation of the aorta once the PDA was closed, but that he would likely be able to live a healthy life with the bicuspid valve, but that he would just need to be monitored by a cardiologist throughout his life. 

Xander was born while we were in the red level for Covid, therefore we were not allowed to have any visitors at the hospital besides my husband and I. This made it difficult for our family, as they were not able either meet or see Xander while we were going through these tough situations, and having to make big decisions as first-time parents. We were also trying to avoid contracting Covid during this time as well, as Xander was in the high-risk category. 

It took a few eventful and stressful days for the PDA to close, and then the surgery was scheduled for the repair of his heart. On September 8, 2021, Xander went into surgery to repair his coarctation, at 16 days old. It was not the easiest to watch our son be wheeled off for surgery, many days after being born. His surgery was successful, and we remained in the hospital for about a week and a half following surgery, while he recovered and worked on feeding. We came home on September 17, 2021, which was Xander’s brother’s 1st birthday. This was very special for us, as we brought home our rainbow baby for the first time on the day that we celebrated the first birthday of our first son, and were able to have a special celebration at his grave together.

Xander has been followed by his cardiologists since returning home and has had great reports at his checkups. Xander did struggle to meet milestones and was also diagnosed with spastic diplegia cerebral palsy when he was one year old, due to the injury to his brain from the unknown heart defect. This type of cerebral palsy mainly affects his legs and motor abilities. We have been in speech, physical, and occupational therapy daily for the past three years, and he also just had a major neurosurgery, which is the only permanent treatment to release the spasticity in his legs, caused by his type of cerebral palsy. We worked hard to advocate for this surgery, performed by only one surgeon in the state, for about two years. We were finally able to have it done about a month ago. We spent about a week in the hospital and will be participating in daily intensive therapy for a year to rehab from the surgery, with the overall goal of being able to walk independently. He has also had an eye muscle correction surgery as well in his 3 and a half years since being born.

Throughout our journey, Heart Heroes was introduced to us while we were in the hospital and Xander received his customized superhero cape right after his surgery. This cape has been a sign of strength and hope for our entire family, and has helped us throughout some of our toughest days. Xander also enjoys wearing it on the anniversary of his surgery, as well as at Hero Walks. It also makes for a great discussion starter to explain to others about his diagnosis, Heart Heroes, and how they can get involved. We have also become connected with many others who have a Heart Hero and have been able to find support in those ways as well. Xander’s diagnosis has changed our family, but has also taught us a lot and made us stronger and more close-knit as we navigate through this journey together.