The longest night I had was 2 days after my son was born, that was the night we chose to remove life support
On 15-06- 2023 I went into preterm labour, my pregnancy was awful for me, but all the scans showed a healthy big baby. When I went into preterm labour he was born really sick but they had no clue what was going on with him, he was covered in hundreds of small spots but there were other worse things going on that we had no clue about. They immediately took him to a bigger hospital and told us we would be there for a long time but he was stable. The morning of February 17 we got MRI results which showed my son suffered a massive hemorrhagic stroke from a ruptured brain Arteriovenous malformation, was in heart failure from a liver Arteriovenous malformation, his liver was also full of hemangioma and his skin was covered in thousands of hemangioma and had a never reported genetic mutation. The stroke had destroyed his right temporal lobe and with the heart failure, hemangiomas and other problems he was in really bad shape, with the high likelihood of profound disability or death even with intervention. My husband and I made that awful choice to let him go peacefully. So February 17, we pulled his life support and had memory photos taken and waited. But my son is the strongest kid I know and fought hard, by the end of the that day he had stabilized and was surprising everyone.
He has had to have multiple life saving brand new surgeries and he has some disabilities(mild cerebral palsy, partial vision loss and speech delay) but he is a fighter. He will probably need more surgeries in the future but we will take those as they come. We have been told that he is super rare in the medical world, his 3 conditions are like being struck by lightning 3 times.
I will never forget that absolutely breathless gnawing devastation of that night, it has put life into prespective to me.
I want to first say thank you to everyone who has read this, I made a promise to the universe that if my son survived this then I would tell as many people about these rare diseases as possible so that if some new parent out there is diagnosed then they wouldn’t feel as absolutely lonely as I did.
I wanted to update also, my son Dominic is doing way better than expected, in fact when we meet doctors who have only seen his records they are shocked at how well he is doing. He does have challenges and we are told he will grow into his injury so things may come up as he gets older. He is at a very high risk for seizures, but hasn’t had any yet. He is 18 months and not walking independently, but only yesterday did 1 step without holding on, but he may need some canes to help him stay stable and we will likely have to renovate our house. He doesn’t talk, but is learning sign language and as soon as we get funding will get a speaking device. He also has some sensory issues, those are currently the hardest thing to deal with but we will see as time goes on.
But he’s funny, he’s a big mommas boy, he loves his big sister, he eats like a pro, he smiles all the time and he’s quite smart even though he can’t talk. He is also an ambassador for the Vascular Birthmarks foundation and has an active Instagram account @spot_and_dot. I’m very proud of him. This is him now
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