Natasha's Story: Marfan Awareness Month

Natasha has very kindly and very generously offered to tell her story in the hope it saves lives. Thank you so much, Natasha.

My name is Natasha. My son, Micah, died suddenly and unexpectedly on July 23rd 2020. He was 19 years old, fit and healthy, he had no medical problems that I was aware of. It’s hard to put in words what Micah was like, to me as his mum he was a bright, chatty, caring, kind, thoughtful, clever, active, friendly, lovely child who grew up to be an amazing young man with the world at his feet. It wasn’t until he died that I discovered so many other people felt the same way about him. I found out he was truly loved because of the amazing person he was inside and out. After six months of him being gone that is slowly becoming a comfort for me. I’ve come to care deeply for some of his friends because they are just as amazing as Micah was and I know they will always hold a special place for him in their hearts and will keep his memory alive and that for a mother who has lost her child is so so very important, both heartbreaking and heart-warming.

The night Micah died it was the second day of the summer holidays. He was at home cooking dinner for his girlfriend. My daughter and I were having dinner at a local restaurant with friends when I got a phone call from Micah’s phone, it was his girlfriend telling me to get home asap, I could hear she was in tears and frantic. I could also hear a female voice telling her how to CPR. I remember I just kept saying “don’t stop, please don’t stop”. It took me about 40 minutes to get home, in the end a waiter from the restaurant took me home, I think because I was on my knees in the car park screaming. I just left my daughter with our friends. I got home to find a paramedic doing CPR, during the next few minutes more paramedics arrived and the HEMS helicopter landed nearby and two/three more emergency responders arrived. There were also quite a few police officers. I wasn’t allowed in his room to see him, I just had to watch strangers coming and going not telling me anything and listen to them upstairs talking to each other, sometime later the clinician in charge came down and told me there was nothing else they could do, Micah was dead. My memory goes a bit blurry then but I do remember his dad arriving, I had to tell him his son had died. Just after that my daughter came back and I vividly remember sitting her on my lap and telling her brother had died, the noise she made will stay with me forever!. The next few weeks are very hazy, I wasn’t eating or sleeping, there are no words to describe how I felt, empty doesn’t come close, I was alive but not alive, disbelief and darkness.

I had never heard of Marfan syndrome before, it was only when Micah’s autopsy report came through that I first heard of it. The coroner had put in his letter that he recommends I read the report with my GP as it contained a lot of “medical terms”. I work as an HCA in a GP practice so I asked a colleague to sit and go through it with me, as she read it she said to me “has Micah ever had a Marfan syndrome diagnosis” no I said and nothing more was said as she went on to explain the autopsy report. When I got back to my mum’s (me and my daughter were staying with her) I googled it and what came up filled me with so much guilt and shame, I felt like I had let him down. Micah had some of the signs of Marfan syndrome and I hadn’t known or done anything about it.

He had extensive orthodontic work when he was younger, he was tall and thin, he had long slim fingers and toes, he had a convex chest on his left side and he had stretch marks and scars on his shoulders, chest and thighs, he had flexible joints, he also had heart development problems. All of these on their own are normal things but put together pointed to something major!. The stretch marks and scars we’d always put down to him getting tall quickly and suddenly, he had mentioned getting his chest looked at a while ago but never got round to it. His heart we had no idea about, he had never had any health problems so had never been checked. He ultimately died of a dissected aorta and faulty heart valves. I know I have nothing to feel guilty about but I will always live with that “what if”.

I then had the worry of my daughter, what if she had heart problems, what if I had heart problems?. The coroner had suggested my daughter referred to a paediatric cardiologist and Genetic consultant. She has been checked by both and has no signs of Marfan and her heart is fine, that was a relief so great I can’t explain. I am still waiting for my Cardiology appointment. The genetic consultant asked my permission to have the sample of Micah’s spleen that was taken during his autopsy sent off to be genetically tested. Due to the current Covid pandemic this will take longer than usual, Micah’s inquest is also taking longer than normal, so I still have no death certificate or “closure”. I’m left with a great big emptiness that was previously filled with laughter, fun and love and an amazing son.

If my story about Micah can help prevent any other parents from knowing what it is to lose a child then I’m more than wiling to share. If any parents or children have any questions please get in touch with the Marfan Trust, they have been really helpful and supportive in the short time I have known about them.

A group of Micah’s friends got together a couple of weeks ago and set up a just giving page to raise money for Marfan Trust in Micah’s name, so far they have raised £3,885 just through social media sharing. Genetic conditions need to be talked about to help with the public and professional knowledge and understanding.

Thank you for reading my story

Natasha.

Join us in our Search For the Missing 15,000 - those with Marfan syndrome unknown to the Marfan Trust.

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Additional Resources

From the Heart: Victoria speaks to Consultant Cardiac Surgeon, Professor John Pepper, and Consultant Cardiologist, Professor Graham Stuart. 

Christopher’s Story: Marfan Awareness Month - This is the story of Christopher whose Marfan syndrome was captured at an early age, allowing him to claim his condition.

In Good Company - Marfan syndrome is writ large on the cinema screen, and lurks behind the sensational sounds of Broadway - here are three notable names.

'Awareness Saves Lives: Wayne & Lewis' Story' - This is the story of Wayne and Lewis - of a life lost and a life shaped by Marfan syndrome.

Lost in Translation - Marfan Encyclopaedia:This article elucidates, delineates and celebrates marfanoid medicalise in a comprehensive list!