After getting engaged to the love of her life in 2015, Rihannon and her husband were overwhelmed to find out that they were on their way to growing the family. Things seemed to go smoothly; Rihannon got all the regular scans and visits to the gynacologist, but when it was time for the 20-week anatomy scan, the ultrasound tech looked confused, and her smile vanished while she was performing the scan.
The ultrasound tech also called a high-risk OB inside the room, so the couple had an idea there was something wrong, and they got the surety when the words’ Your baby is sick’ came out of the OB’s mouth. It was something the couple never wanted to hear, but things felt even heavier when the doctor continued telling how the baby had a rare heart defect, and after birth, he could also have brain abnormalities.
The defect was Tetralogy of Fallot, mainly detected at birth. The doctor also suggested to them a genetic counselor who could help the couple decide if they wanted to continue with the pregnancy or abort the baby.
Before taking any decision, an MRI had to be done, even after which the exact diagnosis couldn’t be made, but it was clear that the baby would be welcomed into the world alive. Thus, the couple who wasn’t ready to give up on the baby decided not to move towards termination, and despite not knowing the consequences, Rihannon was all prepared to carry the baby for the rest of the months too.
Not just this, through all this hard time, the couple also planned their perfect beach wedding and had faith that things would turn out fine. The rest of the weeks were all about regularly visiting the OB, getting scans done, and being examined by doctors, and the induction of labour was planned at 39 weeks. Everything was planned, but it was all chaos when Rihanna’s water broke earlier than expected at 37 weeks, and she did not even realise it in the first few hours.
It took her hours to get into labour, and things got worse when she got a high fever and the epidural did not seem to work either. In so many hours, Rihannon was only 6cm dilated, and so, the unbearable pain made her request the doctors for a C-section.
On 21st September 2015, the couple welcomed their son’s lifeless body, Vicente Jr. The doctors tried saving his life by bagging him and giving him CPR, and were successful.
Right after the baby took his first breath, he was rushed to the NICU, but the mother, who had just taken a glimpse of the baby, did not feel okay. She did not feel her heart racing out of love for her newborn and felt disconnected. It was not definitely because of the baby’s distorted facial features, but the fear of what would happen next.
The doctors, a few hours later, came into the room to inform the parents of how their baby had Apert syndrome and Tetralogy of Fallot. The skull sutures were not fully developed, and all his fingers and toes were fused. He would have to go through multiple surgeries, among which the first one was a hand surgery. It was a milestone for the parents when they finally saw their baby using his fingers.
The baby also had to be kept in the NICU for two whole weeks, as constant care and observations were required. As time passed, the diagnosis grew too. He had a chronic lung disease, got seizures, and so many more diseases, which required the baby to stay on a G-tube most days and a trach too.
Although Vicente Jr has turned three now, he continues to fight every day with the disease. In just 3 years, he had to go through 29 major surgeries, but the baby is so full of life. It does get difficult on some days seeing the baby in so much pain, but the family is determined to take care of him as they think of his presence as a gift from God, too.
