18th December 2020. I was experiencing pains that I thought were contractions so I went into the bath to try and ease the pain but as time went on the pain was getting unbearable. We went to the hospital; they put the heart monitor straight away. We were left for around 20 to 30 minutes, she came back in the room and said “happy baby”. She stayed in the room for a bit then looked worried, looking at the monitor.
She went to get some cold water for me to drink, waited a few minutes then suddenly loads of other doctors came into the room. One doctor looked at the monitor and said “no not good” then I was being prepared for C-section – socks and gown, everything.
At this point in time we were really worried and in a state of shock. When I was down in the theatre they were doing the epidural which took a little time, my husband wasn’t in the room for this but after he was as they began the operation. When Deen was born I heard the doctor say “placenta abruption”, something I’ve never heard of before so didn’t have a clue.
We heard his little cry I looked at my partner thinking everything was ok but I was very wrong in thinking that. Deen stopped crying there was blood coming out from his mouth and ears due to the bleeding. I could hear them doing CPR on Deen but I couldn’t see nothing. I asked the other doctor standing behind me if Deen was going to be ok he said “I don’t know” to which then my body was just in total shock. I then suddenly felt as though I was dying myself so I asked him am I dying “he said no”. After a long 17-20 minutes of resuscitation on Deen he was back with us but very poorly.
I was then in the recovery room where we were both still in total shock. I was crying shaking so worried for Deen. We were put into our own room on the ward. I wanted to see Deen so much but I couldn’t, he was so poorly. After some time we had a doctor come into the room and he told us how poorly Deen was and that they were going to transfer Deen to a different hospital for the cooling treatment. Dad went with Deen as I didn’t want him to be alone. It was my worst nightmare being in the room alone just praying for my baby to be ok.
My husband soon sent over a picture of Deen. He was covered in tubes and cannula and his breathing tube. I couldn’t do nothing but cry. I wanted to be with him so badly. The next day I was discharged so I could be with my baby even though I was in so much pain still. I couldn’t even walk. I used the wheelchair everywhere. When we got there the nurses were around Deen. He was in the incu – they told us it doesn’t look good.
We came into see Deen daily but also had to take care of our other two children at home who were wondering where Deen was. Day 4 of Deen being there at the hospital they was advising us we switch the machines off, that there was no brain activity and nothing but seizures and that if Deen did survive he would be in a vegetable state and always in hospital always on oxygen and would need to be suctioned and need carers 24/7.
We didn’t listen to them, we had every faith in Deen and we was both lucky to have such support from both our families at the time. After 14 days Deen was transferred back to the hospital he was born at for another 4 weeks. It was very hard being a mom at the hospital all day then coming home to still be a mommy to my other children but somehow we made it and got through it all with strength.
He was sent home with oxygen and a monitor but Deen proved them wrong and came off the oxygen at 6 months old. Deen has Grade 3 Hie, he is now 14 months does have epilepsy but on medication so it’s controlled and is non-verbal is fully fed through ng tube and will soon be having an operation for a peg tube in his stomach where his feeds will go through, but can have taste of some foods (baby puree ). He can’t walk or crawl or sit up and has some hearing loss and is sight impaired – not sure how much he can see yet but he definitely knows what he wants and is aware of his emotions and has a beautiful smile and laughs, always held his own head up, loves mommy to sing to him. He’s our little hero of the family and a true fighter.
We love you Deen, stay strong.
It’s lovely to see groups like Peep spread awareness and maybe meet new friends who are going through the same; it’s nice to know you’re not alone. Thank you for allowing us to share our story.