"Down syndrome is nothing to be scared of"
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Written by Li Rogers‘We’re taking your newborn down to NICU for assessment, and we are testing for...Down Syndrome’. These are not exactly the words you want to hear not long after giving birth and having nothing show up during your pregnancy, so you had no clue but they are the words I had said to me. I still remember the look on the Nurse’s face as she gently told me. I remember that look so well, it was a look of ‘do you still want to keep him?’. I remember having a complete break down but not because he may or may not have Down Syndrome, but because I just wanted to be with my baby, hold him and tell him everything would be alright and we still love him.
What followed on from Friday 29th August 2014
has been one hell of a journey. Squish, that’s my nickname for him because he
was such a squishy when born, stayed in the NICU for 5 weeks. A week after his
birth he was diagnosed with an Atrioventricular Septal Defect (AVSD), a hole
in the heart to you or me. A month after discharge he spent 2.5 weeks at Great
Ormond Street Hospital in London where he underwent open heart surgery to repair
his heart. He had a rough time after surgery and the night of his surgery, he
had to have his chest reopened and more pacemaker wires attached as the Cardiac
Team had trouble getting his heart rhythm back under control. They did it though and after a
few more days on the Cardiac Intensive Care Unit than planned and a delayed
chest closure, he improved and came home. At least 40% of babies with Down
Syndrome will have some heart issue, known as a CHD, meaning a Congenital Heart
Defect and 1/100 babies with or without Down Syndrome will be born with a CHD.
These past 10.5 months have opened my eyes and Squish has
really taught me something. Down
Syndrome is nothing to be scared of. There is such negativity surrounding
those two words. Yes, it is a genetic condition, that is no ones fault, and
generally when a baby has Down Syndrome they will have delays and other medical
issues, but he is just like every other baby, he cries, he poops, he eats, he
plays, he smiles, he laughs, he is curious, he is always alert and wanting to
know what is going on around him. Sure Squish can’t sit unaided yet, or crawl
but I know other babies who can’t do those things either and some have skipped
crawling completely and gone straight to walking. He will get there in his own
time and I will encourage him every step of the way. I make sure we attend baby
groups, some are for children with special needs and some are for anyone, I
think they are important for social interaction and learning and what I’ve
noticed is that every baby develops differently whether they have a condition
or not.
I get looks when out and about and because Squish is fed
via a Nasogastric Feeding Tube, I do get asked ‘what’s wrong with him?’ a lot.
I say nothing is wrong with him and
explain he had trouble feeding when born because of his heart condition and
then people say ‘bless his little heart’, or something along those lines, and
they carry on with whatever it was they were doing. I’ve had people ask ‘Is he
Downs?’ and that is something that really gets my blood boiling. He is not his
condition, he just happens to have Down Syndrome. I try explaining this by
saying that you wouldn’t call a child with Cancer by their illness, or any
other condition. This approach has opened a few eyes, but unfortunately there
are still people who refuse to see it that way.
I wouldn’t change my lil’ Squish for the world. His
diagnoses was a complete surprise but I still love him with all my heart. He
makes me smile everyday and I am so proud of how he has progressed and how far
he has come in such a short time. He’s one next month and I honestly can’t
believe how quickly it has come around. As for his childhood and adulthood, we
do not know what the future will bring, we don’t know if he will be able to
attend a mainstream school, although many children with Down Syndrome do and
they do well in their studies, or whether he will be better off in a Special
Educational Needs School known as SEN schools. Whatever happens, we will always
stand by him and encourage him to do whatever he wants to the best of his
ability. I can’t wait to see what adventures we will no doubt end up on.
There is so much support out there for families with loved
ones who have Down Syndrome and if your baby happens to get a prenatal or
postnatal diagnosis for Down Syndrome, just take a deep breath and remember it
is not as scary as it has been made out to be.
Written by Li aka xandsquishmakesthreex (Tumblr & Instagram)
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