The longest night I had was 2 days after my son was born, that was the night we chose to remove life support On February 15 2018 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.
Edit August 24, 2019 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.
Edit 2 September 16, 2019 After multiple people suggested we opened a go fund me for Dom’s speaking device. We are having some troubles with his current speech pathology team and are looking at other options because he really only says one word, which is Ah. Usually by this time babies should be saying multiple words, he is measuring at the age of a 7 month old for speech development. We hope to give him the biggest chance at “normal” as possible.
EDIT May 14, 2021 It has been sometime since I did an edit mostly because 2020 was a very tough year. Dominic started to have seizures in late 2019, but it took until May 2020 to be officially diagnosed. He started a medication which made him highly aggressive and ultimately didn’t work. We then tried a second medication which also didn’t work. By November 2020 he was having multiple seizures an hour and constant epileptic output in his right occipital lobe. We were told that long term kids like Dominic tend to get progressively worse unless brain surgery is preformed. The doctors sent his case for a surgical consult and was determined that he was a good candidate for lobectomy. We were told in January that his case would be scheduled for sometime in the spring but with Covid cases rising in our area there was no guarantee for time. Dominic started to have longer seizures and they started to affect his stamina. They pushed him to the front of the list because there was a real worry of him developing ESES. Dominic had major brain surgery on April 20, 2021, which not going to lie was awful and scary. We were released to come home on April 24, 2021 and since then he’s done remarkably well. I haven’t seen any more seizures but it won’t be confirmed for several more months until his brain heals more. He’s really struggling with some behavioural issues, but that’s a combo of medications and surgery recovery still. It’s been a tough year for little man, but he still gives me big hugs and now respond when I say love you by saying back me too.
Update July 2022 Lots of people have been wanting an update so I thought I would do that.The months after surgery were sort of a blur. We went back to the hospital several weeks after his surgery for an MRI. His skull is healing fine, plate is stable but I can feel the screws through his scalp, his head is asymmetrical now with a noticeable flat spot unless his hair covers it.i believe it was June or July 2021 we went back for an EEG and while his readings weren’t 100% normal, no seizures were detected, so that was fantastic news. He’s had a few more EEGs since then and so far we are clear. He needs to stay on his epilepsy drugs for the foreseeable future, but now they compound them into chewables for him, so he’s a little happier, the liquid was nasty.But Dom did have some side effects which were more disabling to him. He had to have occipital lobe resection so he’s lost more of his vision and now had cerebral visual impairment, he can see but it’s confusing to him and has large cuts in his peripheral vision. He’s getting some visual therapy and learning some skills to help him navigate his world.He’s also dealing with some fairly severe sensory and behavioural struggles. We have to plan our day quite rigidly, otherwise he struggles. This may improve with time, but with the resection and lobectomy it just might be part of him, we are working on coping mechanisms for him but there are days when it’s just a stay at home day for his own comfort and safety.He is walking and moving around fairly well, his left hand use isn’t the best and his left leg doesnt always clear the floor when he’s tired and that causes the occasional fall. We have noticed that his stamina is not equal to other children his age, and when he’s used up his energy he will just drop, refuse to move and can go meltdown quickly We borrowed an adaptive stroller for the summer to try out, but he hates that stroller, like screams his head off and tries to escape hates it. We are kinda stuck on this because I can’t carry him around anymore for long periods, but there’s not really good options right now. We don’t think he needs a wheelchair or a walker, but as he gets bigger it’s become a worry for me. I’m hoping his physiatrist will have some options in the fall.Dom also is a terrible terrible sleeper, when he was in his crib we at least knew he was contained and safe and I could listen to him without disturbing him.
But December 2021 he escaped his crib and I caught him running around the house at 3 am playing with light switches. Dom doesn’t really know when he’s doing something dangerous and it scared me. At this point no matter what we tried Dom would consistently wake up between 12–2am and would be awake for hours if not the whole day except for a brief nap during which I worked, so I went through a period of extreme sleep deprivation. Safety beds for kids are like eye watering expensive, and there was no coverage for it anywhere and truthfully we weren’t expecting him to outgrow his crib so quick after surgery. We finally found an option after several months and when I say I cried tears of joy when it worked I cannot accurately describe how relieved I was. I don’t know if it will work long term, but this gives us growing up time and hopefully he will learn to stay in his room.He got accepted into a preschool with an aide in September 2021, and we struggled whether or not to send him, but he desperately needed the extra help and extra time in a classroom so he went. We had a fantastic aide and she really helped Dom get used to his classroom and some routines. But while in school we spent from November onwards sick with one thing or another. He needed steroids a few times and in June we had to call an ambulance because he was struggling to breath with severe croup.
During this time we found out he was quite iron deficient so we started treating that, hopefully this help his immune system and we don’t spend another year sick.Truthfully this last year has been hard, as he gets older and bigger it’s easier to see the delays/disabilities he has. When he gets into meltdown mode it takes all my attention and strength to keep him safe. Hes talking but his words don’t make sense about 50% of the time and a lot of things we have to guess, we figured out recently that if he says 8.7 it means bad and if he says 8.9 then it’s good. We are going back into a communication device class in the http://fall.In school it was very obvious that he was/is behind, the first time I realized it I was sad, I’m not anymore, he is who he is and I just am here to support him how he needs it. I have cut back on alot of therapy for him, we had a year where I think we spent more time in rehab and therapy rather than him just being a kid and I’m not going to do that to him. While he is affected by these challenges at this point I don’t want it to define him. I incorporate therapy for him everyday at home, but I have limited his appointments so he can be a kid. He gets extra help at his school and in the fall we will resume help with his aide, but this summer we are just living.
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