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Damilola 22/10/2012 – 08/01/2013

Mother to an angel that were undiagnosed until after birth

I became pregnant and given due date of 5th November 2012

There were no complications whatsoever during, until 34 weeks when they found an unbilical cord cyst to which i had to have a section at 38 weeks. 

My pregnancy went quiet well, except i were very accident prone, but all scans and bloods were all normal and everything fine.

20 weeks came and went, dopplers done constant and nothing unusual at all.

Limbs fine, organs all fine and seen normal.

Then i moved and slipped one day but went to work then a couple days later i went for a check up and they decided to give me a quick scan to reassure me, when they noticed at 34 weeks there were a large umbilical cyst, which were rare and had never been seen at this hospital, also they could only see 1 kidney which were strange to say they had seen 2 normal previous.

they consulted st michaels hospital in bristol and they said to deliver at 38 weeks in Exeter by CS to prevent anything rupturing.

On the 22nd my angel were born at 11.36am, and told that she would go to bristol that evening and i would follow the following day.

they spent around 10 minutes resusitating her then taken to neo-natal unit.


the following day in bristol she had a blood test for genetics as they said theyre appeared to be more problems and wondered if they were related in some way.

It turned out she did have 2 kidneys one being in the pelvic area, which annoyed as previous scan at 20 weeks showed 2 normal.

she were having apneas and then needed an operation for the cord cyst, she sailed through the operation, remained strong, breathing fine, no oxygen needed apart for a couple of occassions.

also showed she had a hole in the heart and a cyst to the brain from a MRI scan.

A few days later i were told she had Edwards syndrome, to me that meant nothing, i had never heard of it and were under the impression it were going to be a syndrome where she would be physically disabled which i could deal with eventually, but then when told there were no life expectancy i just shut down, and said i dont need to know anymore, i know that she is a miracle she shouldnt be here, nor made it past birth and the next few days were crucial.


after around 5 days she had a severe lapse in breathing and had to decide on CPR which i said she should not as wouldnt want her suffering, i felt cruel but you have to be in that position to know though.


when i heard other mothers then saying there children had to have an operation on this or the other i thought you know what i would rather that, to just have to worry about an operation in order for survival but in our case this wasnt, there is no cure and there would and is going to be an end at some point.


After so many tests, prodding and poking, even tests done for meningitis in the back she tolerated it all and never winced at all, she become so strong and used to it, then they said to me surgery wise were the only reason holding her at bristol and now that had been done she could leave and return to Exeter, which we did after nearly 2 weeks.


we returned to the neo-natal unit for more observational purposes, and for us as her parents to learn to adjust and get our heads around when we take her home.


they advised us to take her of monitors for her oxygen and heart as that when we got home there would be non of that, and had to try to adjust to what we had to face.


at nearly 3 weeks old we were allowed to take her home, which initially were scarey but it were lovely having her in her surroundings with us.

we have upto now had some blips of apneas and feeding is poor but she is holding down her feeds given by a NG tube.

And requires 24 hour care but we wouldnt change anything for the world.

she is our angel and she has fought from day 1 infact prior to that her journey via pregnancy, birth, operations and even now, and want to thank all those for there support so far.

she is now nearly 2 months old and doing well at present :)

when reaching nearly 3 months she became a little poorly with a cold then seemed to get better only waking one morning to the eventual expected.

Well since my little angel passed away it has been extremely difficult, a huge loss and hole in my life, I had 3 wonderful months with her and God took her at her most beautiful and radiant stage of life, happy, full of smiles, interacting with us and totally doing fantastically, gaining weight until an awful Virus robbed her, RSV, which is fatal when and child with a weakened immune system gets this, and can be hard to shift even in the normal child without any illness, a cold she could of recovered from but this took her very quickly, but she was peaceful and in her own surroundings where she had an abundant amount of love, hugs, kisses and me and daddy at her every need or murmour, it was very hard as resusitating your child is something you never intend on having to do! but you do it! and after all we have been through the past year i would not of changed for the world, she were worth every thing i experience and wouldnt of changed that experience for the world, because since her passing she has totally taught me to be more assertive, positive and stronger, and my daughter damilola all i can say is thankyou for that in your short time here, that you taught me so much. Love you always Mummy xxxx

SOFT Child


Condition: T18
Relationship: Mother