“There Was No Benefit To find Out…” Said Mother From Hampshire.

 In Down Syndrome Community Voices, The DS Advocate

So my story goes something like this…

My husband and I have 3 fabulous daughters!  We had also endured terrible loss, with many babies along the way.  Then we discovered there was to be another addition to our family, and this one was to be a boy!

Rewind to the start. Excited, apprehensive and pregnancy joy started the journey!

12 Week scan, came and went, bloods taken, everything looking very standard so far…..

20 week scan, then revealed I had far too much amniotic fluid (polyhydromidus).  Great I thought, another scary pregnancy to contend with 😢

22 weeks we discovered Charlie had a duodenal atresia (his stomach was not attached to his bowel).  However the NHS did everything  in their power to reassure us that the surgery our son would need to repair this, once he was born, would be very straight forward.  We met the surgeon and the neo-natal nurses, who would look after our boy once he arrived, and felt completely confident that they could fix his teeny tummy!

We were then given a 1 in 3 chance of our boy also having Down Syndrome.  We were offered an amniocentesis which we declined and were advised of a private blood test we could have to confirm “100%”  which we also declined (I mean this costs £500).  There was no benefit to our baby for us to find out pre-natal, so what was the point?

Fast forward, many scans later and we are now at 34 weeks.  I had taken some medication up until 30/32 weeks to reduce the amniotic fluids building up too much, but now it was deemed unsafe to take such meds after this gestation period.  Sofa rest had been dull but I knew I needed to keep my boy in the womb for as long as possible…

Our little miracle decided he wanted out at 34 weeks, after my waters semi-broke, amniotic drainage was performed by my obstetrician to try and buy us a few more days in the womb however, our little man had other ideas!

Charlie was born that night and weighed in at 3lb 14ozs on 9th Feb 2016.  I could see from Charlie’s eyes he had the typical characteristics associated with Down Syndrome and realised immediately a diagnosis would just be confirmation for me… We had the most wonderful Doctor to deliver the diagnosis of DS for Charlie and for that I will be eternally grateful.  For she had a son herself that also has DS and she told us her personal stories of how proud she is of her amazing boy!

Soooo, after an operation to fix Charlie’s tummy, we came out of hospital after 3 weeks.  We tube fed him breast milk until he decided to pull his nasogastric tube out in the middle of the night and he then fed straight from a premie bottle (clever boy).

I would like to say to anybody getting a pre or post natal diagnosis of Down Syndrome for their child, please don’t be scared…..  You literally just hit the jackpot.  You could not be more lucky.   We have the most amazing kids you could ever imagine and for any negative there are 10 positives!

Yes, Charlie takes a while longer to do some things.  Yes, he will need our help, no doubt, for a little while longer, but he is amazing and we have been blessed to have him!

If you are expecting and your baby has or is suspected to have DS, then you are one lucky parent! Be prepared to experience love like you wouldn’t believe possible ❤️💙

 

 

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