Misdiagnosing Downs Syndrome

Hi mums!
I am reaching out in the hope of getting some help!

my baby is 11 weeks old and when he was born he was wrongly diagnosed with downs syndrome. this diagnosis was made and we were told that he definitely had it before any blood tests were carried out. We thought nothing of this because when a doctor tells you something you automatically believe them and i had never experienced anything like this before.

anyway, to cut a long story short- he was kept in neonatal unit for a week due to this diagnosis. when we visited him, which was almost all day every day, the staff were very reluctant to let us hold him. we were often told "we've just got him settled leave him". in fact when he was born i expected to be given him straight away for skin to skin contact as this was in my birth plan but this did not happen. instead i never got to hold him until he was almost 2 hours old. (i did have an emergency c-section but still they never made an effort to put him close to me or anything). they sent me home due to bed blocking, which i totally understand that another mother needed the bed more than me, but they refused to let our baby come home with us due to the diagnosis. we could not understand why they would not let him come home as they were not doing anything medical with him in neonatal at this point. a few midwives even referred to it as "purely a babysitting service" until they could arrange a plan for him due to the diagnosis. community midwives had even offered to visit daily so he could come home but the hospital would not allow it. eventually 2 days after i was discharged we travelled to the hospital to spend the day with our baby. we challenged the consultant as to why our baby couldn't come home to which he said he was happy for him to come home as he had "ran out of medical things to do with him".
an hour later the consultant returned and gave us the news that he had made a mistake and that our baby's blood results had came back and he didn't actually have downs syndrome. 
we returned home with our baby that day but he was to return to hospital for a check up later that week due to having a faint heart murmur. when we attended this appointment the consultant said to us "even though the test results have came back negative he still looks like he has downs syndrome, i think he is just going to be one of those babies that looks like they have it". we were extremely upset at these comments because the results were negative.

when we were told that he definitely had downs syndrome naturally we were upset and in shock but we came to terms with this and accepted it. if anything i think it made us love our little boy even more. we opted not to have the testing done when i was pregnant as it would not have mattered to us and at the time when we were told that he had it, it really didnt matter. 
i remember lying in my hospital bed thinking to myself i was going to make sure he had the best life i could possibly give him. of course we should have had the common sense to question the doctor when he told us he had it without confirming by bloods, but we are 22 years old, first time parents and i had just been through a traumatic birth- 3 days labour, emergency c-section where babys head was stuck in my pelvis. But when a doctor tells you something you automatically believe them, and of course i know doctors make mistakes, i just fail to understand how he could tell us this and say it was definite without doing bloods first. we were never issued with an apology face to face or in writing.
we filed a complaint to the hospital but they keep ignoring our emails.

i have started this petition to try and prevent this from happening to any other family. 
please if you could sign and share it so i can get as many signatures as possible to get it into the scottish parliment i would be so so so grateful.

i am super super grateful i have a healthy baby and iam loving being a mummy, i just feel after everything we endured, it shouldnt be for nothing and the doctors etc involved should not get away with it.

i have attached the link below.

thanks

steph xx

https://www.change.org/p/nicola-sturgeon-stop-misdiagnosis-of-downs-syndrome-in-babies

Posts

  • I am so sorry you have been through all of this! I hope you have submitted a complaint to the CQC and not just to the hospital as the way you have been treated sounds awful! 

    They need to investigate what has happened here! 

Sign In or Register to comment.

Featured Discussions