My husband Nick and I have Leanne (age 11 ½ ), Shelby (age 9 ½ ) and Molly who will be 1 in 3 weeks time. Years went by after Shelby was born and so we came to assume that for some reason or another, a third child wasn’t meant to be. Therefore when I fell pregnant with Molly it was very unexpected, very special and – to me – nature’s way of telling us that it is in control – not us!
At my 20 week scan, we were told that Molly was weeks behind with her overall growth, but especially with her abdominal circumference and femur length. My consultant was “at a loss” and requested that I have the triple test and return in two weeks time for another scan. This I agreed to at the same time as making it clear that I wasn’t willing to have anamniocentesis . Two weeks later the triple test results were back and were showing high risk for Down’s Syndrome and the scan showed that Molly had a hole in her heart, i.e. a Ventricular Septal Defect (VSD) and that Molly was even further behind with her growth. My consultant said that she respected my wish not to have the amnio test and that she was going to treat my pregnancy as a Down’s pregnancy and that I was to prepare myself for this. We came to terms with the fact that Molly had Down’s quite quickly – looking back, I wasn’t upset about Molly having Down’s, but rather scared that I wasn’t going to be ‘good enough’ to care for her and that I would maybe fail in some way.
I had a scan every two weeks from then on and Molly remained worryingly small. During the last few weeks of my pregnancy I had a C.T.G three times a week. At 36 weeks my consultant and I agreed that the time had come to induce labour as Molly wasn’t growing and she would probably grow better out of the womb than in from then on. I had Molly on September 14th and she weighed 2 lb 15 oz. She was in the Special Care Baby Unit for 1 month. The staff there said that they had never had to look after a baby that small who was well and could do everything for herself. Blood was sent away for Chromosome testing and the results came back as perfectly normal. We were so used to the fact that Molly had Down’s Syndrome that it took us a while to accept the fact that she hadn’t! Molly’s weight went down to 2 lb 12 oz and then began to creep up very slowly. She was fed Nutraprem 1 by NG tube while she was in hospital. When we got her home feeding was very difficult. It took Molly an hour and a half to have 20 ml of milk and so I would spend most of my time trying to feed her, as well as trying to look after Leanne and Shelby. Two weeks later she was admitted to hospital and discharged 3 days later with an NG tube which she had at home for the next month.
When she was 3 months old, Nick and I noticed that her left leg was quite a bit shorter (and also thinner) than her right leg. We took Molly to see her consultant who noticed straight away that it was the whole of the left side of her body that was smaller. He referred us to a specialist hospital for genetic testing and we finally got the test results a couple of weeks ago confirming that Molly had RSS. She has been back in hospital due to infections a couple of times since the first time she was admitted. She seems to pick up every cold, virus, infection, etc. that she comes into contact. She reaches her goals very well – is strong and happy (and an absolute joy to be with) and has just started to crawl (on one knee and one foot!) She weighs 10 lb 12oz and is losing weight at the moment. She is still in ‘newborn’ clothes and manages to get stuck in the most unusual little places! Molly can eat food with a very smooth consistency, but anything with even the smallest, softest lumps will make her throw up everything she has in her stomach (which takes an awful lot of time and effort to get in there in the first place!) She can’t even have a chocolate button! Luckily Molly has been on Infatrini milk for quite a while now and this seems to be doing her a lot of good.
She sweats an awful lot. Her eyes are different colours, the whites of her eyes have a blue tinge to them and her eye-lashes are unbelievably long. She takes Omeprazole for her reflux, physiotherapy regularly, and we are due at the hospital on Friday as her new toe-less boots have arrived from America and they will build up the bottom of the left boot so she’ll be able to stand up straight.
We have powdered antibiotics at home to mix as soon as she gets a temperature – as I understand it, this is to protect her heart because of the VSD in case she has a bacterial infection. I have not read anything to make me think that heart problems are linked to RSS, so I am assuming that it is a coincidence that Molly has a VSD as well as RSS.
I have started putting Molly in a buggy instead of her pram when we walk around town because she wants to sit up and see everything around her and just loves being outside. I suppose it does look slightly odd as her legs don’t come over the edge of the seat. Anyway, I have now been accused 3 times of pushing a doll around in a pushchair (at the age of 36!) and the other day 4 young women walked past me, burst out laughing and started shouting to each other, “Was that real? That wasn’t real!” Unfortunately there is nothing you can do about ignorant people, but it kind of makes you feel as though you want to humiliate them back – rightly or wrongly!
Claire – Suffolk UK