In June 2020, Myself and my Partner Arianne started trying for baby. After two months of trying, we caught pregnant and were elated.

Everything was going as well as expected, with the expected pregnancy side effects. at the 12 week scan we saw our little baby for the first time, and were told everything was fine. We were so happy, and we started telling our close friends and family. The next 8 weeks went by so slowly as we waited in anticipation for our 20 week scan - the anatomy scan, most people refer to this scan as a gender scan - not many people think about any abnormalities, that could occur, neither did we. We went in to the scan hoping to hear a heartbeat, we heard our baby's heart, and we both sighed with relief, the baby was healthy. 

After a few minutes of quiet in the room, with the sonographer, nurse and a student, we looked at each other happily. We were asked to go for a little walk and come back in a few minutes. They told us this was just to get the baby moving to get a better view. We think in reflection the sonographer wanted to discuss their findings with the other members of staff in the room, which we were grateful they did with out us in the room. 

We came back in and the sonographer told us she had found a severe abnormality in the babies heart, we could tell how serious it was by the look on her face, and then when she took us to a 'Quiet room', to process what we had been told. 

She then explained that we would need a specialist heart scan in a different hospital. We were booked in for the next day, which we found surprising as we thought it would take a few days or even weeks before they would be able to get us in. That night was so long, we held each other and cried, I don't think we really knew how this would end and were still hoping for the best. Knowing the gender we decided to name our baby, Noah Harrison White, a strong name for a strong boy. 

The nurses were so kind to us, and explained everything in detail. They made sure we knew as much as we could about the heart before they explained what was wrong with Noah's heart. They explained that he has Tetralogy of Fallot (ToF), which is four major problems in his heart, including a large hole, that would require lots of surgeries once he was born, and through out his life. Along side this, they suggested we get an amniocentesis - a test to diagnose genetic abnormalities in unborn babies - because people born with ToF, sometimes have a genetic abnormality called DiGeorge Syndrome. DiGeorge syndrome, is a spectrum, if Noah had it, there is a chance that he would only be mildly disabled along with the ToF, or he would be completely disabled. There is no way of knowing how disabled he would have been before he is born. 

We were booked into the same hospital just a few days later for the Amnio. It was incredibly painful for Arianne, and went against every motherly instinct. There is a risk of miscarriage in the week following. We held each other tightly for two weeks while we waited for the results. 

On Christmas eve we got the call we were eagerly waiting for but also dreading. We were told that Noah didn't have DiGeorge but an unbalanced chromosomal translocation. Arianne asked if this is a worse outcome than Noah having DiGeorge, the Doctor told us that this is a much worse result for Noah. He had a translocation that had never been seen in text books or recorded. Looking at the two chromosomes involved and the size of the translocation, we were told that Noah would almost certainly be deaf, blind, dumb, he would have cognitive disabilities as well as physical disabilities. 

With the diagnosis and prognosis we were given, taking into account our 5 year old son, Isaac, and Arianne's disabilities, the reality of the situation shattered our hearts into a million pieces.

We were advised to have a 'TFMR'. It went against everything that we wanted - we tried for a baby, we wanted him so bad, and then we were faced with the decision to end his life. We spoke to many doctors, nurses, family and friends, Arianne sought refuge on a SANDS online forum, and had so much support from other women that were in our position, or had been in our position. We spent a few days in a bubble, feeling Noah move around, savouring every one of his gentle kicks, talking to him, and loving him. We knew that we needed to protect Noah from pain, as parents that's all you want to do for your children. If Noah was born, he would have known nothing but pain. 

Noah's heart was stopped at 11.40am 28th December 2020, the skies literally changed when he went - when we walked into the room, it was a beautiful sunny day, when we left the skies were an angry grey. Our lives were changed forever. The next few days were unimaginably painful.

On the 31st of December, Arianne was induced and we watched the fireworks of New years eve from our hospital window as she laboured. 

Our precious little Noah was born on the 1st January 2021 at 1.36am, at 500g after a 14 hour labour. 

We take comfort knowing that he is not in pain and is waiting for us somewhere.

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