Downs Syndrome

Rachel - posted on 06/30/2015 ( 3 moms have responded )

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Please can i have some advice-
I wasnt having much movement at 34weeks pregnant, so went to hospital to be monitored.
They decided to scan me, and then told me that there were concerns about the baby's stomach and heart, that linked with Downs.
They suggested an amnio, and said we could discuss the option of a termination!
The results came back today, that our baby does have ds.
Please could anybody advise from here- my hospital has offered nothing.
Do i go full term, is the baby going to have a normal labour. Is the baby going to def live? Does our baby need any special help.
Will they be normal size?
I have certainly felt less movement than my other pregnancies, is this the reason why?
My head and heart are spinning, and i dont know how or what to think xx

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Priscille - posted on 07/01/2015

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Hi Rachel,

I don't have the answers to all your medical questions, but I have some tools to deal with emotional overwhelm, which I am feeling that you are in right now. So if I may I will share some with you.

First of all, it is quite natural to go through the turmoil you are going through right now. You just had news that the baby you were expecting to be healthy and well, has downs syndrome. This is obviously a shock and needs some adjusting to. Even though it seems that you were already intuitive and anxious about this before.

Also, when during the day you feel a rush of emotion and questions coming to you, take some time to pause, breathe and comfort yourself that no matter what things are going to be okay and that everything will work out in the end.

Then it could be a good idea to connect with down's syndrome association and networks and talk to mums who have been through the same things that you are. Doctors are great and they will give you the 'logical' answers you are looking for, but they seldom have to deal with the emotional part of it. Mums who have been through what you are living on the other hand know exactly what you are going through and can help you deal with it emotionally. Moreover, from mums, you can learn what kind of difficulties and challenges they face on a daily basis with a down syndrome child as well as what new opportunities and joy it is bringing them.

Most of all, whatever anyone says about what you should do, be assured that the decision to carry on the with the pregnancy or to terminate it, is totally and completely yours (and your partner). You have to be aligned with your own values and do what your heart dictates you to do.

Sending you lots of positive energy in these difficult times.

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Rachel - posted on 07/01/2015

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Hi,
Thanks for replying. They arent seeing us until next week, so have only spoke briefly on the phone.
They said they cant give an definite answers about our baby, in terms of the future~ as a ds baby can be born with a varied amount of disabilities. So it wont be sure until after the birth.
They have offered to give our baby a lethal injection, to ensure it dies before birth 😢
It is very difficult to trust these so called experts, as feel let down by them- i had asked for an amnio on four different occasions (my gut feeling) the first time being in february, but was refused, saying i was too far gone.

~♥Little Miss - posted on 07/01/2015

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These are all really important questions that none of us are equipped to answer. Do you have an OBGYN?

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