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My babies journey

My babies journey

When I was 12weeks pregnant we got the news that our babies bowel was growing on the outside. We were monitored very closely and other things started to show. He had very big kidneys, a big cord a lot of amniotic fluid and a big tongue. This is when genetics got involved.

We got the diagnosis around 29 weeks and I went into labour at 32. Olly was born weighing 6.12lb :) he had surgery to fix his tummy, but was very poorly afterwards. He was on a life support machine and we were told to expect the worst. They think he had septicaemia. He made a miracle recovery and we got to take him home at 5 weeks old.

At 9 weeks old Olly stopped breathing and his daddy saved his life, we rushed him to hospital and he had a tongue reduction 2 days later. He was in icu for two weeks after that back on a ventilator. We got him home in time for his first Xmas :)

Things were ok for a few month, until we had a routine ultrasound and a Hepatoblastoma was found measuring 3cm (liver tumour) this was the day that changed our lives forever. Olly had a line pit in and started chemotherapy 2 weeks after diagnosis.

He did so well during his chemo he wasn't sick and he never lost his hair :) he had 4 rounds of chemo then had surgery to remove the tumour in may 2012

His surgery was 9 hours, which felt like forever, we were told he might not survive the surgery so we were frantic waiting about. He did brilliant and survived and we went to see him in icu. He was sedated and on a lot of morphine as he had been cut from top to bottom. He started to get worse and 3 days after the first surgery he needed a laparotomy (an operation to see what's going in inside) they found that he had had a huge bile leak, so they cleaned him all out and sent him bk to icu. But Olly kept getting worse he was not responding and he was needing adrenalin to keep his heart pumping!!!! They told us that he was dying and we both said our goodbyes to our 8 month old baby.

They took him down for emergency surgery and all our family came to be with us. I had it in my head we had lost him so I stayed away from everyone I needed to be alone. But a miracle happened and our baby survived AGAIN!!!!! He had peritonitis a fatal toxic thing for anyone to have never mind a baby with cancer.

Things started to look up after that and Olly got off the ventilator and got back to the ward. We were in hospital 8 weeks in total and it was the worst experience ever. But Olly is the picture of health now. He has finished chemo now and is like a normal little boy into everything and trashing my house. Our journey has been so hard and at times I've wanted to give up, but I wouldn't change my boy for the world :)


5 Replies

Thank you so much for sharing your amazing story. Wow, what an amazing little champion you have, you must be so proud of him. He looks gorgeous and quite similar to my son at that age! And you should be proud of have been through so much. I hope things go more smoothly for you from now on and you can have lots of fun together. Life is so precious and should be enjoyed, some people never get to realise it though until its too late. I'm sure you will never forget it after all you have been through. Wishing you lots of peace and joy together xx


Thank u :) I am so proud of him he is amazing. He was born to fight xx


He is a beautiful little boy and a fighter for sure! U all have been through so much! I wish him good health! Xx


I'm really happy for you and your baby. I'm so glad you both made it. Thank you for sharing your amazing story. It lifted my spirits.. i think my baby has bws too. She also had surgery for her tummy at birth as well. Doctor hasn't confirmed yet but she has large tongue, ear creases, and really tall for her age. I keep worrying of what might come next.


Please let me know how he doing now. My son Joshua just turned eight and we no longer have to get the AFP bloodwork.


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