Robin and Bryan live with their beautiful family in Edmonton, Alberta. The couple had five children: Kiara, Karissa, Kashton, Kalyssa, and Kylie when Robin found out she was expecting their sixth child. During a routine 12-week ultrasound, Robin had a Nuchal Translucency Screening to measure the thickness of the fluid at the back of the baby’s neck.
A couple of days later, Robin’s doctor called her to share the results of her ultrasound. At that moment, Robin had no idea that something so simple could shatter and forever change her family’s life. Their baby was positive and potentially at risk of Trisomy 13, a genetic disorder that fewer than 10% of babies diagnosed with survive. With a potential diagnosis of something so rare, their doctor recommended they did further genetic testing to get a clearer answer. The additional testing came back negative, however their doctor was not convinced on the latest results and felt something wasn’t right.
On Robin’s next ultrasound, it was confirmed that their baby didn’t have the four chambers a normal heart was supposed to have. With no answers, the DuPont family waited to speak to a specialist.
At 20 weeks, a specialist confirmed that their baby had a severe heart defect and was officially diagnosed with Complete Atrioventricular Septal Defect, Coarctation of the aorta, Hypoplastic Left Heart Syndrome, and a severe AV valve regurgitation, which ultimately led to them being told their baby would not make it to birth and it was recommended to not continue the pregnancy. This was not an option or even a consideration for Robin and Bryan, they wanted to fight for their baby boy and wanted to take it day by day and appointment after appointment. The doctors assisted with more genetic tests to completely rule out Trisomy 13, and fortunately, his amniocentesis came back normal completely ruling out that diagnosis.
On March 15, 2022 Kolt DuPont came into the world fighting and made a loud entrance, that announced his arrival. Kolt was immediately put on IV medication that encouraged blood flow through his tiny body. Much to the doctor’s surprise, Kolt was doing extraordinary and was even breathing all on his own with the support of the medication. Later that day, it was decided to try him without the IV medication but unfortunately, as soon as they took him off he could no longer breathe on his own and had to be immediately intubated. He was put back on IV medication and put into an induced medical coma to prevent his heart from working too hard.
At only two days old, Kolt’s ventilator clogged, and he was given CPR for 45 minutes before being reintubated. A traumatic moment for the entire DuPont family and Robin remembers it, “it was absolutely devastating to go from carrying my sweet baby for nine months, where I felt he was protected. To watching my tiny baby surrounded by doctors, and on only his second day fearing for the worst. I will never forget how terrifying that moment in time was.”
At five days old on March 20th, Kolt was officially listed as a Status 4, the most urgent status, for a heart transplant. At six days old, Kolt had his very first open-heart surgery for pulmonary artery banding, He received a pacemaker and was placed on dialysis as well. Shortly after, the family watched Kolt open his eyes again. Even though he was incredibly weak and wasn’t able to move his body, he would move his little tongue as if he had a soother. This was an incredible moment for the family.
When Kolt was one month old, he received a stent to keep his duct open which allowed him to be taken off the IV medication he had been placed on since birth. Kolt was very, very weak and unable to move his small body. He was placed on hold for a transplant, as his specialist team did more genetic testing to try and determine if a muscle disorder was causing these health issues. This was incredibly disheartening for the family and left them unknowing what to expect.
It was an ongoing battle for the DuPont family with countless challenges. Robin and Bryan remained bedside with Kolt through everything he went through and watched him battle against the odds while managing the care of their other children at home. Robin remembers, “Bryan and I barely saw each other. Our other kids were miserable because they went from having us home all the time and always doing things as a family to only seeing mom or only seeing dad. They were scared for their brother and didn’t understand why he couldn’t come home.” When Kolt’s chest tubes were being removed, they had become stuck and tore his lungs which required an emergency thoracotomy to repair the damage that had been caused. Kolt continued to fight, and fight, for his life which led to his heart working too hard and ultimately his heart was failing at a rapid pace.
Kolt’s genetic tests came back negative, and he was placed back on the transplant list at a Status 4 for a heart.
“This was the absolute worst rollercoaster ride to be on. Doctors tried to prepare us for the worst and broke the news that Kolt might not make it and needed a heart transplant now. We were allowed the opportunity to bring our other children in to meet him for the first time while we waited for that life-saving call.”
The next couple of weeks were a blur for the DuPont family filled with uncertainty, emotion, and hope. After much discussion and planning by their doctors, Kolt was now 10 weeks old and was going to receive an LVAD which was incredibly rare for a baby his size. After his second open-heart and gruelling eight-hour surgery, Kolt came out of that surgery the healthiest everyone had seen him. He had colour back in his face and was gaining strength in his arms and legs. The LVAD was the perfect bridge to transplant to allow Kolt to be in the best condition to receive a heart transplant.
Exactly one week after the LVAD surgery, the DuPont family received the call no parent could ever forget. On June 1, 2022, at only 11 weeks old, Kolt received the gift of life.
“We are forever thankful for another family’s selfless gift in an absolutely devastating time. Kolt is the happiest baby and now he will be able to grow up with his siblings and live a happy life.”
Today, Kolt is still on lots of medications but slowly eliminating a few of them. Bryan and Robin say, “Kolt is doing wonderful, despite everything he’s been through he is the happiest little guy and will brighten any room with his smile. He is working on his balance and almost sitting up on his own. He is also working on his strength and is able to almost get up on his knees to crawl. He likes to blow bubbles and babble, and he loves to play, especially with his siblings. He absolutely loves music and when we sing to him. His appointments are finally starting to become more spread out which is fantastic. He’s happy to be home.”
Photo Credit: Flytographer