The first 6 months of Jaylan being born were challenging for my husband and I. Soon after the birth of Jaylan we learnt that he was suffering from a heart condition called Patent ductus arteriosus (PDA), which is where the connecting channel (called the ductus arteriosus) between the foetus’ heart and lungs remains open until after birth, where they can be surgically closed or can simply close on its own.
Almost 50% of infants with Down Syndrome are likely to have a heart condition of some form. We now understand that PDA is one of the most common heart conditions found with Down Syndrome babies.
My husband and I attended numerous hospital appointment at Hare Field Heart hospital to make sure the PDA channel in Jaylan’s heart was not going to cause problems as he got older. Jaylan was fortunate enough that his PDA sealed naturally within the first few months of being born and, to our relief and joy, was discharged from the hospital.
We also learned that that Jaylan had a liver dysfunction called Ascites Gallstones. Regular hospital check-ups at Kings College Hospital was unsurprisingly routine for this unexpected problem. We were constantly being faced with the unknown and left wondering what other health problems we were going to come across.
There were lots of questions running through our heads and we knew that research had to be done as the much-needed support was not forth-coming. We were left to our own devices to look up these health conditions and to ensure we made the best decision for our son.
We had been faced with a life-changing situation which we were slowly getting a handle on. Our only wish would have been that we had time to prepare and educate ourselves before Jaylan came into our lives. In my family, we believe that everything happens for a reason – some call it fate, some call it destiny. Jaylan came to us as we were the best people to provide him with the love, attention and care he needed.
I would recommend that all new parents of Down Syndrome babies do all the reading and understanding they need to feel well-equipped for the upcoming challenges they may face. Of course, some things are unforeseeable and some things may never happen, but in my experience, it’s always better to know what you are going into.
How we coped
As with any family, and especially with an Indian family, we were fortunate enough to have plenty of family around us who provided us support and helped with building our knowledge on Down Syndrome including support groups that we could turn to for guidance. Some days were very stressful and nights were often sleepless. Knowing that we had the support of our family meant that we were not alone and that we had people to help with making decisions and provide advice where necessary. Simply having someone to talk to was enough to keep us level-headed and calm.
With all the commotion around Jaylan, Verisa - my then 4-year-old daughter – was losing out on the attention she needed from her parents. Like with any child, she started asking questions…
“Why are mummy and daddy leaving me at home with my grandparents? Why are they not playing with me anymore? Where are they going during the day? Where is my baby brother?”
This was heart-breaking to hear and was even harder to explain to such a young child that her brother was not well and needed even more attention to get better. Describing that this was the only way she would be play with him and do the things that “normal” siblings would do – whatever normal meant.
She may not have known then, Verisa would soon learn that her relationship would not be the same as those around her. Though different isn’t necessary a bad thing. For now, a baby brother with Down Syndrome was the same as a baby brother without Down Syndrome.
In my next blog I will talk about our first year with Jaylan and Health issues.