A New Life Begins….

In July 2010, Master BB was born with Down’s Syndrome – there were no indicators he had Down’s Syndrome at all before birth. We had tried to have a nuchal fold scan done with Miss BB but it hadn’t been conclusive, so we decided not to have another with Master BB. However we did have many scans, including 3D and 4D scans.
Strangely, whilst being pregnant, I can remember asking on a forum, if Down’s Syndrome could be spotted on a 3D / 4D scan.
The 3D scan pictures were very clear, and they showed us one thing – that Master BB looked completely different to Miss BB. Strangely, the one feature which Master BB had, was a more prominent nose, and yet a flatter nose is often a defining feature of a child with Down’s Syndrome.

Master BB was born by elective Caesarean Section at 37+4 weeks. He was a healthy 9lbs 4ozs and looked great. The operation had held high risks for me, so the focus was very much on getting me through the operation alive and well. We breathed a huge sigh of relief once we were back in the recovery room. It was only then, that we really could look at our beautiful newborn son. Within minutes something happened which I will remember forever. A doctor and a nurse practitioner came into the room. The doctor examined Master BB. He checked for all the baby reflexes and every now and again would nod to the nurse. He checked Master BB’s eyes. But when he opened Master BB’s hands up and looked at the palms I knew exactly what he was looking for – the single crease that is an indicator of a baby with Down’s Syndrome……

The paediatrician confirmed that they suspected that Master BB had Down’s Syndrome but he didn’t seem to fit the usual pattern of a Down’s baby. Master BB wasn’t floppy. He was feeding well. He didn’t appear to have a heart problem. His appearance wasn’t overtly like a child with Down’s Syndrome but he did say that it would come clearer. Their only question to us was whether Master BB looked like his sister. I remember saying, no, we did not expect him to anyway (because of the scans). We instantly started Googling, and within minutes I knew the main signs and symptoms. However it was not immediately obvious to us, or to others, that Master BB had Down’s Syndrome. There were signs, but also things which did not fit. He was strong, healthy and feeding well. The paediatrician appeared to very much sit on the fence, and even showed us that she had just one palmar crease on both hands, and she did not have Down’s Syndrome. Master BB has one palmar crease on one hand, and three on his other. The only thing we commented on were Master BB’s small and unusual ears. He also failed his post natal audiology checks.

I had looked after some children with Down’s Syndrome, and I also knew a teenager with Down’s Syndrome, so I had a good idea of what to expect. However Mr BB had no idea and he had a massive misconceptions of what Down’s Syndrome was, which just emphasises for me, why it is so important to raise awareness of the realities of Down’s Syndrome. It took ages to calm Mr BB down to make him understand. We both cried lots, we both Googled lots. We both just wanted to know……we were looking for signs but we did not know……

It took 3 agonisingly long days to formally diagnose Master BB with Down’s Syndrome.

As you can imagine it wasn’t what we wanted to hear, but we both knew that it was heavily weighted towards Master BB having Downs Syndrome. The doctor came armed with a load of leaflets and information – one of which she recommended we did not read! She asked if we had any questions….well what are you supposed to say? We didn’t really have any questions but she said she would come back in 10 mins and see if we had any then. At that point we both broke down and cried and cried.
We still didn’t know what to say to the doctor when she returned. The doctor wanted Master BB checking out thoroughly, but by this stage, we were all ready and packed to leave the hospital. I had had enough. We needed to go home and be a family. So after some serious foot stamping, and some basic tests, the hospital agreed to let us leave as long as we returned with Master BB the next day for more tests.

One of our great sadnesses is that we spent so much time pre birth worrying if I would come through the C-Section ok that we hadn’t had time to be excited re having a baby. We had only a tiny amount of time with Master BB before the first conversation about Down’s Syndrome. We barely got any time to celebrate that Master BB was here and with us safely. This sadness that we never celebrated Master BB’s arrival still reduces me to tears even to this day, 3 and a half years hence. We made sure that his first birthday was a true celebration of his birth and we had a great beach party with family and friends.

There are two photos next to my bed – the two above of Miss BB in her pink candy striped dress. These were the first moments when she met her brother. She absolutely adored him. She had no idea her brother had Down’s Syndrome at the time, and her acceptance of him, unconditionally as her brother, are very special to me. She loved him so much, and she still loves him absolutely now. They are best of friends and she is so protective and helpful towards him.

There’s no doubt that the diagnosis turned our lives upside down. Master BB’s birth started us on the biggest roller coaster of our lives. We locked the doors and cried for days, and weeks, and months whilst Googling every question under the sun about Down’s Syndrome…….as we grasped the new pathway our lives were set to take. I wished every single day for at least a year that Master BB did not have Down’s Syndrome. However there was nothing we could do to change our gorgeous fait accompli.
To this day, I still wish Master BB did not have Down’s Syndrome, but slowly, little by little, the Down’s Syndrome subsided into the background; and Master BB our beautiful, gorgeous, cuddly, very very much loved son, has led us through what have been some of the best years of our lives. I love watching Master BB grow up more slowly than Miss BB did. I am savouring every moment, and enjoying each and every achievement, cuddle and kiss. Master BB’s diagnosis opened doors and wonderful adventures which we could never have forseen. We have met some amazing people and children, and done some really interesting things…all because Master BB has Down’s Syndrome. These are the silver linings which no one tells you about. Yes the future may be different to the one we thought we would have 4 years ago, but believe me, this is better than anything I could ever have imagined. I absolutely love being mum to Master BB and his extra chromosome!