[tri-wings] Re: My story

Hi Maria,

We lost our baby girl to Trisomy 18 two years ago next month.  We found=20
out at 22 weeks into my pregnancy that she was ill.  Like you, the=20
sonogram I had at seven weeks didn't give me the dates I expected, but I =

figured, Arily being our first, I thought that I had probably just got=20
my dates wrong.  They were only out by 3 days, what's 3 days?  Then a=20
blood test at 18 weeks gave us a high possibility of spina bifida, so we =

had a sonogram and this time, she was a week out, but the doctor said=20
that it was still within the margin of error but he wanted to do a=20
follow up in 3 weeks.  It all came crashing down on June 8th, 2006 when=20
the doctor found multicystic kidney, a heart defect, even though it was=20
a minor one, and a single umbilical artery.  And she was now 3 weeks=20
behind.  They offered us an amnio right there, and we figured that we=20
needed to know, so we'd know what to expect.
I'm so sorry you had issues with the hospital losing your sample.  I'm=20
so sorry you lost your beautiful little baby.  Thank you for sharing=20
your story, it reminds me of ours in so many ways.  Even though I know=20
it's hard now, it does get so much easier to bearas time goes by, but=20
you never forget your little angel baby.
We're planning a move to London in August, my husband's just accepted a=20
job in Kensington.  If you even feel the need to meet with someone who's =

been through the trisomy nightmare, I'd be delighted for the opportunity =

to make some friends.  Like you said, no one really understands the=20
impact that losing a child has on you until they've been through it.
Take care,
Jean

Maria Scudder wrote:
> Hi
> I am not sure where or how I post a message, mine is for the loss of ou=
r baby at 17 weeks. I wanted to be able to speak with people that have be=
en through the same thing as it is a time that you can feel quite alone. =
Myself and my husband (I'm 28) were married in October last year and I wa=
s diagnosed with endometriosis two years ago. We always knew that once we=
 were married we wanted to try for a baby. I had resigned myself to the f=
act to be patient and that it could take us longer than most people but I=
 feel at the end of February this year after trying since October of last=
 year, so we was over the moon.=20
> We went for our first scan and it took the sonographer about 10 minutes=
 to wake baby up (obv. now I know why), it was then she told us that we w=
as not as far gone as I thought but I came away just thinking how could t=
hat be the case, as we was so sure of the date of conception. Regardless =
of feeling confused, we had seen the heartbeat and we instantly fell in l=
ove with our baby.=C2  We was then booked in for another scan when I was =
just over 13 weeks (which we now know would have been 15 weeks) and as so=
on as baby came up on the monitor, I don't know if it was mother instinct=
 but I just knew that things were not right with baby. It was laying head=
 down and I just had this overwhelming sense that all was not well. It wa=
s then she told us that there was a very high amount of nuchal fluid behi=
nd baby's neck and that we were to go to a hospital in London as soon as =
poss. That was on Weds 4 June and we went to the hospital that following =
Monday. It wasn't until
>  then I realised how many other people must go through similar things, =
and you don't feel so alone.=C2  Our world came crashing down when we kne=
w all was not well after that 2nd scan.=20
> I had a CVS procedure which I would have to wait for the results=C2 but=
 they could tell me so much from the scans . Baby had lots of extra fluid=
 around it and under the skin, it's abdomen had not formed properly and o=
nly contained the bowel,=C2  baby also had a hole in the heart. They told=
 me I would definitely miscarry at some point as so many things wrong. I =
don't know where I got the strength from over this time period but I thin=
k you can either choose to lose yourself in despair or be as strong as yo=
u can be in the circumstances and this has been our first hughe thing to =
face as husband and wife and we have really supported each other.
> I kept chasing the hospital for the results and was promised I would ha=
ve them by=C2 Monday 16th June. In the end I managed to get through to a =
midwife at the London hospital and they gave me the bombshell that they h=
ad in fact LOST my sample.I had been as strong as I could be (with our da=
rk days) but this is when i really lost it, I was distraught. I had to tr=
avel back up to London that evening to have another CVS done because myse=
lf and my husband wanted to know what was wrong with baby. When we arrive=
d, one of the heart specialist's that had looked at baby's heart=C2  the =
following Mon recognised us and said that the 'heart specialist' was in t=
he building and he would like her to look at baby's heart.=C2  It was the=
n that we were told that our baby had died (15 weeks gestation but as we =
now realise 17 weeks). I still wanted to have the CVS done but for whatev=
er reason (my placenta was high anterior), they had to do an amnio instea=
d. They promised me I would
>  have the results by Friday 20 June. I had to have a D&C procedure on T=
hursday 19 June, a date that will always stay with me. It was the most sc=
ariest experience I've had to go through and to know that baby was no lon=
ger with us, a very sad day and a very sad few weeks it has been for us. =

> I received the call yesterday afternoon from the London hospital and th=
ey confirmed that our baby had Trisomy 18 (Edward's Syndrome). We will ne=
ver forget our angel baby, we was so looking forward to baby's arrival.=C2=
  This has been=C2 such a=C2 journey for myself and my husband, one of wh=
ich we will never forget. I bought a rememberence rose called 'rest in pe=
ace' which we will plant in our garden to always remember our baby that c=
ouldn't stay with us in this life but will continue in the next.=20
> I wanted to share my story as it is a time when you feel very alone. No=
ne of my friends have ever gone through anything like this and it would b=
e great to be able to talk to people that have gone through similar exper=
iences.
> Maria (28 years old)
>
>       __________________________________________________________
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>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>  =20
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>
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--=20
Mum to Arily Faith, born asleep, July 8th, 2006
and to Conor, born June 21st, 2007



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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