My baby’s battle with cloacal exstrophy– Sammie and Kriss’ Story

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Sammie and Kriss’ son Rief was born with an extremely rare condition which meant his abdominal organs were outside his body and his reproductive organs were split in two.

Rief was born by c-section on the 25th July 2019. We knew during my pregnancy that he had complex issues, including exomphalos (where the intestines and some of the organs develop outside the abdomen) and severe spinal issues. Our doctors told us that he had a life-threatening issue called a limb body wall complex and that he wouldn't make it outside the womb. But because the doctors could not be totally sure if he had this condition or not, we decided to continue with the pregnancy.

As soon as Rief arrived into the world and we heard him make a few small cries, it was like a huge weight had been lifted from our shoulders. At 6lb 9oz he was a big boy considering the doctors had thought he would only be around 4lb.

But he was quickly rushed to the NICU. Because although Rief wasn't born with a limb body wall complex, he did have cloacal exstrophy, which meant his bladder was outside his body and his reproductive organs were split into two. He also had a form of spina bifida called a meningocele.

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Rief was put on breathing support and rushed from Birmingham to Manchester Children's Hospital where they are able to deal with this very rare condition. He was one of only four babies born with it in 2019.

Cloacal exstrophy can also affect the baby’s respiratory system as having the organs being out of the body puts a huge weight on the lungs, so it took four weeks for Rief to be able to breathe without the ventilator.

We were nearly three hours from home, so we stayed at the Ronald McDonald house next to the hospital so we could be closer to Rief if anything happened. But being so far from home meant that our family could only occasionally visit, which made things a lot harder. We did make some true friends in the NICU unit, bonding over the ups and downs and laughing together. It's a place no one ever wishes to be, and sharing that experience brings you closer together with other parents.

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Rief thrived for 10 days on just oxygen - in which time we got to cuddle him, bath him and put him in special outfits. He made a name for himself with the nurses as the feisty one and he certainly was. We will truly treasure these memories.

At 6 weeks old, Rief aspirated some milk and contracted a lung infection. He was very poorly for a few weeks and even with all the medication and four blood transfusions, his lungs couldn't cope.

Some people may shy away from saying that they have an angel baby so that others do not feel awkward, but we don't: we want Rief to live on in people’s memories.

We wished we could have brought him home, and at times we talked about trying to, but unfortunately we never could. He fought for as long as he could but on the 8th October, Rief took his final breaths with his mummy and daddy holding him and our family around us. I know that he knew we were there because he opened his eyes and squeezed my hand one last time. We spent two nights with him in the Snowdrop Suite, a room for families when their baby dies, where we got to cuddle him, dress him and lay him in a cot next to us. We took hand-prints and casts, made special memories with a 4Louis Memory Box and held him until we let him go.

NICU life is tough and even more so when you don't get to take your baby home. But we are truly grateful for the nurses and doctors who cared not only for Rief but for us as well. The nurses let our family stay with him when Rief was really poorly so that we could get some sleep - we didn’t want to leave him and, even though only parents are normally allowed, they made the exception for us.

The issues that Rief had helped us to look after him in a different kind of way. We learned new things about his care needs and about the condition. Some people may shy away from saying that they have an angel baby so that others do not feel awkward, but we don't: we want Rief to live on in people’s memories. We do have a child and we are parents but just in a different way and he will always be our firstborn beautiful baby boy.

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