At our 13 week scan the nuchal fold was measuring high so we were told by our consultant what the possible diagnosis could be and were and asked if we wanted an amnio to confirm. Although I felt so guilty having the test I knew that I needed to know to be prepared. You see the type of person I am I would only have spent the rest of my pregnancy worrying about things and probably doing my baby more harm.
At 17 weeks on the 25 October 2011 we got the amnio and I got a phone call the next morning to confirm that our baby had DS. Don’t get me wrong there were hysterical tears for the first ½ hour until my husband got home from work then there was calm as we were both together again to discuss the news. Nothing changed for us though and we still loved our baby as much as we did before the diagnosis. Albeit we didn’t know anything about DS, but you see we had just returned from a cruise where quite a few of the passengers were adults with DS so we had just had the experience of knowing that things could be OK and life could be “normal” whatever that may be!!!
We then went to see the consultant at the hospital. They gave us our options, discussed termination with no pressure whatsoever, and when we told them it wasn’t an option for us the consultant at the hospital was great. We got to see a paediatrician right away who basically talked us through the health risks and gave us information booklets from Down’s Syndrome Scotland (DSS). If anything it was probably a bit of information overload that day.
The remaining 20 weeks were spent reading, preparing, nesting and getting ready for our new arrival. We had got in touch with DSS and been put in touch with a parent contact and had a visit from the family support worker. All was good. Oh don’t get me wrong we worried about stuff you read on babies with DS i.e. the early labour, not feeding, small weight at birth, but at 39 weeks and 5 days the day arrived for me to be induced. At 1:19 am on 29 March 2013 Miss Charlotte Anne Drummond arrived into our lives weighing 8lb 7oz and breastfed almost immediately, what did we have to worry about, she was doing great.
After staying up all night watching her, texting, phoning and facebooking everyone we knew, we lived that first day in sheer unadulterated pride and joy.
The day after, however, was a completely different story. We got, what we thought, a routine scan and ECG. I sat in blissful joy staring at my girl and thinking how well she was doing as the sonographer did their job. Nothing was said and then about 5 minutes later the paediatrician on duty came in and very bluntly told me that Charlotte was in heart failure. She had two holes, two leaking valves and would probably need surgery within 3 weeks. This was a Friday so he then said I would remain in hospital until Monday and they would then send us to Yorkhill Sick Children’s Hospital.
As you can imagine we were distraught as we had spent the last half of my pregnancy believing our baby had no major health issues and wouldn’t require any surgery.
We spent a very teary weekend in the maternity hospital then went to Yorkhill on the Monday, sick to our stomachs
with worry. Once there Charlotte was given another echo scan and checked over by the consultants. They confirmed that charlotte had an AVSD and complete/partial VSD and would need heart surgery but certainly not in 3 weeks. We were told to take her home. Again there were tears as I had imagined being admitted to Yorkhill with Charlotte until she had her surgery and not getting her home at all, we had no idea of what this condition meant, what it would involve or of the timeframe. Some explanation of that when we had the initial diagnosis of her heart condition would have been helpful.
I have to say although you try and enjoy things and all the new experiences of having a new baby the heart issue was always in the back of our minds. Any slight failing in her health terrified me.
At 6 weeks Charlotte’s feeding started failing, she just ran out of puff and physically couldn’t suck anymore, so she had to be fitted with an NG tube to assist. Again, another traumatic experience at the time as we had to learn how to manage the tube and the reflux that came along with it.
On Friday 8 June 2012 we got a call saying there was a cancellation on the Monday and could we bring Charlotte in that night for all her pre-op checks. I’m not sure how others felt but for me it was obviously the initial panic but also a strange sense of relief that she was finally getting “fixed”.
We had all the pre-op checks carried out on the Friday night and got our girl home with the instructions to bring her back on the Sunday afternoon. Needless to say that weekend was spent filled with visits from family and friends, lots of cuddles and lots and lots of tears.
We went back to the hospital on Sunday and I stayed with Charlotte that night. The morning was terrible as Charlotte had been fasted so was obviously upset and hungry and we were just upset at the prospect of what lay ahead of her that day. The surgeon came to speak to us and all I could look at was the size of his hands and think how could he possibly operate on my tiny girl with hands that size. Thankfully Colin was there to talk through all the procedure, the risks, timeframes, possible outcomes and to sign the consent form. I just couldn’t let go of my girl. At 9:30am that morning we got to take her to theatre and the walk there was one of the most awful experiences of our lives.
Much of that day was spent in a daze and sniffing the sleep suit she had slept in the night before. We got a phone call at 3:30 to say she was out of theatre, all had gone well and to make our way to ICU to see her. We got to ICU and spoke to the surgeon. They had completed a full AVSD and left cleft valve repair. He was really happy how things had gone and was really pleased with her progress……and breathe!!!
That first sight of her was terrifying. Our wee tottie lying in that bed with tubes and wires everywhere and no movement from her whatsoever. But she was through it and all the signs were good. She did remarkably well and was moved to HDU on day 2. By day 3 we were back on the ward and I got to stay with her again. She was off her oxygen by day 5 and for the first time we got this huge cheesy smile we had never seen before. It was almost as if she was telling us how good she was and things would be OK now.
By day 6 we were discharged. Unfortunately she took a very bad chest infection shortly after and we had two short stays in hospital following her surgery but in terms of her heart repair she was doing great.
Feeding was still an issue as she didn’t go back to the breast or bottle so we spent a bit longer with the NG tube as we had to teach her to drink from a cup and get onto solids but we got there eventually and after 5 and ½ months we got rid of the NG tube and haven’t looked back since.
We had more surgery in August this year for tonsil and adenoid removal and although the thought of more surgery terrified us, we got through it. Don’t get me wrong the recovery wasn’t great but like everything els our girl came through it smiling.
I am so pleased to say that now we are all back in “normal” family life. We are all back at work, Charlotte attends nursery four days a week, we’ve had our first holiday abroad and about to go on our second.
We have built up a fantastic support network of other families in the area and myself and a few other mums will be doing our first fundraiser in March 2014 to coincide with world down’s syndrome day.
I could go on writing and telling you how wonderful my girl and this journey we are on is. It’s not the journey we planned, but does anything really work out the way you planned? Charlotte continues to flourish in every way and brings such love, pride, light and joy to our lives every day.