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Our Family Stories

Angelo Jack



Our names are Stacey and Joel; we are Angelo Jack’s Mummy and Daddy. I married my wife on 20th August 2011. She found out that she was pregnant on 10th February 2012 and we were expecting our first baby in October 2012. Going by her dates our baby was due on the 16th October 2012 and we had our 1st scan on 12th April 2012.

It was on this day that our world came crashing down. We were told that our baby had abnormalities, We were told that our baby had a large cystic area in the lower abdomen and an exomphacelous.

We were sent to see the prenatal diagnostics team, they reccomended that we have further tests to rule out chromosonal abnormalities. We went to John Radcliff hospital on the 16th April 2012 to have the CVS done and we were told that we would have to wait a week for the results to come back.

However my wife had a phone call from the hospital the very next day, she was informed over the phone that our baby had Edwards Syndrome.

It felt like our whole world had stopped and came crashing down on us. We had to go to the hospital the next day to discuss the results further and discuss our options. I was told that our babys edwards syndrome was most likely to be full Edwards and unlikely to be mosaic or partial; the only way to rule it out fully would be to have an amnio done.

We decided against an amnio and said what will be will be. We were advised to terminate our pregnancy as the outcomes were bleak. We were told that we had a 95% chance of loosing our baby during the pregnancy. We were told there was a high risk of a preterm labour, we were also told that if we carried on with the pregnancy and our baby survived the pregnancy then we had a 30% risk of having a still born baby.

At our scan we had our due date changed to the 24th October 2012. We had regular scan and checks, we had a lot of meetings too. On 23rd may 2012 we had our 20 week scan, my wife was only 18 weeks. We were told that our little baby is a little boy; we are going to call him Angelo Jack Smith. We have been told that he has got cysts on his brain (choroid plexus), his head is an irregular shape but we already knew that, his stomach is in his chest cavity so he probably has a diophramic hernia. Because his stomach is in his chest cavity it is pushing his heart to the right side of his chest. He has still got the omphacele but it does appear to be smaller. Apart from that everything else appeared to be well.

On the 28th July 2012 we had a 4d scan, we were told here that our son did not have exomphaleus but he had a cyst on his cord. 17th September we saw our consaultant again and had another scan, we were told that his heart is in the right hand side of his chest, the right hand side of his heart is dilated with a small left side, the septum does not look normal, he has a complex cardiac problem to add to the list of his other problems.

Our baby boy who we named Angelo Jack was born on the 27th October 2012. Our precious baby boy fought for 40 weeks and 3 days, he defied the odds for all this time. We spent a precious 2 hours with him before he passed away due to his edwards syndrome and a diaphramatic hernia. He was born at 18.39 and passed away at 20.30, he weighed 4lb 11oz and was 48.5 cm long. He was perfect in every single way.

https://ouredwardssyndromejourney.blogspot.com/

 


Created: 28/01/2019 18:21

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