Dominic - From birth to diagnosis
When Dominic was born I was a single mum. Dominic wasnt planned and I
had been working in Cyprus when I fell pregnant. I came home to the UK
after being unable to work through things with his Father who is Cypriot.
From the minute I found out I was pregnant I knew this little being was going to change my life and when I laid eyes on him in the early hours of August 23rd 1994 I was in love. My sister, Lynn, who was at the birth felt the same.. She also had a special relationship with Dominic. He was beautiful and the nurses on the maternity ward in Watford kept asking to hold him and would do their rounds with him in their arms. (Dominic arrived 5 days early and he left us on his due date 25 years later.)
Dominic was a very hungry, colicky baby and I was convinced that his crying and discomfort meant he was seriously ill. My health visitor would scold me saying that he was a healthy,beautiful boy and to stop worrying as I would make myself ill.
I was convinced that something was going to happen though for so many reasons. He was my life and we had such a strong bond from the get go. There was really something special about this child and I felt lucky that he was mine.
Dominic hit his milestones with no problems and on time...sitting,crawling,walking.
When Dominic was almost a year old Dominic's father and I reconciled and Dominic and I moved to Cyprus to become a family.
Around the time of Dominic's 2nd Birthday, in 1996, I became pregnant with Vanessa. At the same time my lovely Mum, who had been suffering with MS for years, was diagnosed with cancer and given months to live. She actually managed a few weeks and died aged 58. I managed to get over to see her before she became unconscious and stayed in Watford with my family and Dominic until after the funeral. We spent a very sad Christmas in England that year.
Back
in Cyprus I took Dominic to a paediatrician in Nicosia as I was
concerned that he wasnt talking and I couldnt keep eye contact with him. This was when Dominic was diagnosed as having glue ear. Ahhh...that
explained it all...or did it?
In 1997 Vanessa was born and Dominic had grommets put in his ears and I took him to regular speech therapy. He started at an English school in Nicosia and he struggled there. It was clear to me that he had learning disabilities. I was washing clothes constantly in my efforts to try and get him out of nappies too. Aswell as the learning disabilities and glue ears I was convinced there was something else wrong especially as he still wasnt jumping or running amongst other things. Things that his peers did easily. I voiced my concerns to Dominics paediatrician, a cold woman, who pretty much told me that I was being "an over protective mother and should lighten up".
We went to UK for Christmas again and decided to have Vanessas christening while we were there at the same church Dominic was christened in. Whilst in the UK I decided to take Dominic to a health visitor at my old doctors surgery to get another opinion. The HV was concerned about Dominics enlarged calf muscles, the fact he wasnt communicating and a few other issues so she referred Dominic to a child developmental clinic.
The lady we saw there asked me to take his outer clothes off so she could see him. She was also concerned about his calf muscles. She then ran through some tests trying to get him to go up steps, jump, run, talk, make eye contact and other developmental tests. Once she had finished we sat down to discuss her findings and THAT was the first time Muscular Dystrophy was mentioned to me. She asked me if I knew what it was. I said I had heard of it (The internet was uncommon then) and she then referred Dominic back to the doctors to have a blood test. This was a week before Christmas 1997.
I had borrowed a double buggy for Dominic and Vanessa whilst in England and wheeled it up to the doctors surgery. My old doctor took Dominic's blood and then sat looking at me very seriously.
The conversation is one I will always remember as if it was happening now.
Doctor - You know that this blood test is to test Dominic for Muscular Dystrophy,dont you? You do know what Muscular Dystrophy is dont you?
Me - I've heard of it, yes, but I dont know anything about it. Is it serious?
(Silence whilst the Doctor stared at me with a serious face)
Doctor - It is a condition that causes all the muscles in your body to waste away eventually making walking very difficult.
(Silence again and a serious face. My mouth was wide open and tears had started falling)
Me - Are you telling me that Dominic will go into a wheelchair if this blood test is positive?
Doctor - I'm afraid so......
(Then silence again and a sad but serious face)
Me - Is it worse than that? (Still silence) Is he going to die? (Totally sobbing now)
Doctor - The tests may be negative so let's wait and see but if they are positive it is life limitting. I'm so sorry. I will let you know when the results are back and make an appointment for you to come in which would normally be in a week but with Christmas around the corner it may be after then.
I pushed that buggy back to my Dads house with tears streaming down my face and motorists going past staring at me but I didnt care. This couldnt be happening. Not my boy. This couldn't happen to him, surely?
Then it was Vanessas christening which was a total blur. I do remember sneaking in a prayer during the service asking God to spare my son and let the results be negative but I dont remember much of anything after that Doctors appointment until on Christmas Eve. Nearly everyone was out and I was there looking after Dominic and Vanessa when the doorbell rang. It was the Doctor and just one look at his face told me it was bad news. My prayers hadnt worked. Why else would he make a house call on Christmas Eve?
He told me that Dominic had Duchenne Muscular Dystrophy and would need to go to London for a biopsy. My Doctor, and even now a lot of doctors, didnt know there was more than one kind of MD but Duchenne was the most common and the most severe
Christmas was awful again and just after taking the decorations down Dominic tripped and hit his head on the coffee table and we ended up in A and E. I was so angry with what life was throwing at us. A life limiting illness was surely enough and now stitches on Doms eyebrow. I felt like screaming 'LEAVE HIM ALONE' (The scar was visible all his life)
I stayed in England with Dominic and Vanessa while everyone else who had been there for Christmas and the christening went back to Cyprus.
Dominic had his muscle biopsy in Hammersmith hospital which in itself was traumatic. By then I knew that Dominic had learning difficulties, which was attributed to the MD, and trying to get him to drink medicine to make him drowsy so they could take a biopsy was just terrible and then trying to keep him on my knee while the medicine set in was near impossible as he wanted to get down and play.
After two tries at sedating him they did the biopsy. I wasnt allowed in and so I went outside of the hospital to wait as I didnt want to hear him crying or shouting. Once completed we were allowed home, or back to my UK home.
I cant remember how long after that it was that we went back to the hospital and I was told that my son did have Duchenne Muscular Dystrophy (DMD).
He was 3 and a half years old.
I remember going back to my Dads house feeling like I had been hit by a sledgehammer. Crying was the new normal and I remember not thinking clearly or rationally and I tried to distance myself from my darling,happy boy who I was joined at the hip with as I thought it would be easier to deal with life after diagnosis.....not to be so close to him.I don't think that lasted a day. Later on both Vanessa and I were tested. Mothers normally carry the gene that causes boys, and a very few girls, to have DMD. I didnt carry it and Vanessa didnt either. This was a spontaneous mutation.
My children and I boarded the plane back to Cyprus not long after, my life having become unrecognisable from the last time we boarded the plane. I was defeated, destroyed and knew that our lives would never be the same again...and I tried to digest the fact that Dominic would almost definitely be leaving this Earth before me.
Dominic didnt understand what had happened so he was happy as always, Vanessa was a baby so she didnt either.
I had changed forever and at that time I started mourning the loss of the son I thought I would have until my dying day and I knew I would be mourning him for the rest of my life.
I knew I would never be at peace again.
From the minute I found out I was pregnant I knew this little being was going to change my life and when I laid eyes on him in the early hours of August 23rd 1994 I was in love. My sister, Lynn, who was at the birth felt the same.. She also had a special relationship with Dominic. He was beautiful and the nurses on the maternity ward in Watford kept asking to hold him and would do their rounds with him in their arms. (Dominic arrived 5 days early and he left us on his due date 25 years later.)
A DAY OLD DOMINIC
Dominic was a very hungry, colicky baby and I was convinced that his crying and discomfort meant he was seriously ill. My health visitor would scold me saying that he was a healthy,beautiful boy and to stop worrying as I would make myself ill.
I was convinced that something was going to happen though for so many reasons. He was my life and we had such a strong bond from the get go. There was really something special about this child and I felt lucky that he was mine.
Dominic hit his milestones with no problems and on time...sitting,crawling,walking.
DOMINIC AGED 11 MONTHS WITH ME
When Dominic was almost a year old Dominic's father and I reconciled and Dominic and I moved to Cyprus to become a family.
Around the time of Dominic's 2nd Birthday, in 1996, I became pregnant with Vanessa. At the same time my lovely Mum, who had been suffering with MS for years, was diagnosed with cancer and given months to live. She actually managed a few weeks and died aged 58. I managed to get over to see her before she became unconscious and stayed in Watford with my family and Dominic until after the funeral. We spent a very sad Christmas in England that year.
MUM WITH NEWBORN DOMINIC
DOMINIC AND A VERY PREGNANT ME IN 1997
In 1997 Vanessa was born and Dominic had grommets put in his ears and I took him to regular speech therapy. He started at an English school in Nicosia and he struggled there. It was clear to me that he had learning disabilities. I was washing clothes constantly in my efforts to try and get him out of nappies too. Aswell as the learning disabilities and glue ears I was convinced there was something else wrong especially as he still wasnt jumping or running amongst other things. Things that his peers did easily. I voiced my concerns to Dominics paediatrician, a cold woman, who pretty much told me that I was being "an over protective mother and should lighten up".
We went to UK for Christmas again and decided to have Vanessas christening while we were there at the same church Dominic was christened in. Whilst in the UK I decided to take Dominic to a health visitor at my old doctors surgery to get another opinion. The HV was concerned about Dominics enlarged calf muscles, the fact he wasnt communicating and a few other issues so she referred Dominic to a child developmental clinic.
The lady we saw there asked me to take his outer clothes off so she could see him. She was also concerned about his calf muscles. She then ran through some tests trying to get him to go up steps, jump, run, talk, make eye contact and other developmental tests. Once she had finished we sat down to discuss her findings and THAT was the first time Muscular Dystrophy was mentioned to me. She asked me if I knew what it was. I said I had heard of it (The internet was uncommon then) and she then referred Dominic back to the doctors to have a blood test. This was a week before Christmas 1997.
I had borrowed a double buggy for Dominic and Vanessa whilst in England and wheeled it up to the doctors surgery. My old doctor took Dominic's blood and then sat looking at me very seriously.
The conversation is one I will always remember as if it was happening now.
Doctor - You know that this blood test is to test Dominic for Muscular Dystrophy,dont you? You do know what Muscular Dystrophy is dont you?
Me - I've heard of it, yes, but I dont know anything about it. Is it serious?
(Silence whilst the Doctor stared at me with a serious face)
Doctor - It is a condition that causes all the muscles in your body to waste away eventually making walking very difficult.
(Silence again and a serious face. My mouth was wide open and tears had started falling)
Me - Are you telling me that Dominic will go into a wheelchair if this blood test is positive?
Doctor - I'm afraid so......
(Then silence again and a sad but serious face)
Me - Is it worse than that? (Still silence) Is he going to die? (Totally sobbing now)
Doctor - The tests may be negative so let's wait and see but if they are positive it is life limitting. I'm so sorry. I will let you know when the results are back and make an appointment for you to come in which would normally be in a week but with Christmas around the corner it may be after then.
I pushed that buggy back to my Dads house with tears streaming down my face and motorists going past staring at me but I didnt care. This couldnt be happening. Not my boy. This couldn't happen to him, surely?
DOMINIC AND VANESSA IN THE BUGGY
Then it was Vanessas christening which was a total blur. I do remember sneaking in a prayer during the service asking God to spare my son and let the results be negative but I dont remember much of anything after that Doctors appointment until on Christmas Eve. Nearly everyone was out and I was there looking after Dominic and Vanessa when the doorbell rang. It was the Doctor and just one look at his face told me it was bad news. My prayers hadnt worked. Why else would he make a house call on Christmas Eve?
He told me that Dominic had Duchenne Muscular Dystrophy and would need to go to London for a biopsy. My Doctor, and even now a lot of doctors, didnt know there was more than one kind of MD but Duchenne was the most common and the most severe
DOMINIC OPENING WOODY - CHRISTMAS 1997
Christmas was awful again and just after taking the decorations down Dominic tripped and hit his head on the coffee table and we ended up in A and E. I was so angry with what life was throwing at us. A life limiting illness was surely enough and now stitches on Doms eyebrow. I felt like screaming 'LEAVE HIM ALONE' (The scar was visible all his life)
I stayed in England with Dominic and Vanessa while everyone else who had been there for Christmas and the christening went back to Cyprus.
Dominic had his muscle biopsy in Hammersmith hospital which in itself was traumatic. By then I knew that Dominic had learning difficulties, which was attributed to the MD, and trying to get him to drink medicine to make him drowsy so they could take a biopsy was just terrible and then trying to keep him on my knee while the medicine set in was near impossible as he wanted to get down and play.
After two tries at sedating him they did the biopsy. I wasnt allowed in and so I went outside of the hospital to wait as I didnt want to hear him crying or shouting. Once completed we were allowed home, or back to my UK home.
I cant remember how long after that it was that we went back to the hospital and I was told that my son did have Duchenne Muscular Dystrophy (DMD).
He was 3 and a half years old.
I remember going back to my Dads house feeling like I had been hit by a sledgehammer. Crying was the new normal and I remember not thinking clearly or rationally and I tried to distance myself from my darling,happy boy who I was joined at the hip with as I thought it would be easier to deal with life after diagnosis.....not to be so close to him.I don't think that lasted a day. Later on both Vanessa and I were tested. Mothers normally carry the gene that causes boys, and a very few girls, to have DMD. I didnt carry it and Vanessa didnt either. This was a spontaneous mutation.
My children and I boarded the plane back to Cyprus not long after, my life having become unrecognisable from the last time we boarded the plane. I was defeated, destroyed and knew that our lives would never be the same again...and I tried to digest the fact that Dominic would almost definitely be leaving this Earth before me.
Dominic didnt understand what had happened so he was happy as always, Vanessa was a baby so she didnt either.
I had changed forever and at that time I started mourning the loss of the son I thought I would have until my dying day and I knew I would be mourning him for the rest of my life.
I knew I would never be at peace again.
Kaye, I am pretty sure that a lot of people, including me, wish they could have you energy, kindness, faith and love. Surely Dominic reads you from where he is now and thinks that his mother is the best mothr ever. When myself, I read what you write, strangely I feel happy. I understand and know Dominic a little bit better and feel his presence: he is still among us even if I have never seen him, which I regret today. Keep doing great writing, please. Your friend from France. Jeff
ReplyDeleteThank you Jean Francois.
DeleteAs you know Dominic was named after your brother who passed away in a motorbike accident. Both were very beautiful.
I hope to see you in the very near future.x
You are very welcome, Kaye. Thank YOU. Yes, I know, "my" Dominique was even younger when he flew away (22). I am sure they met and chit-chat a lot about life and other things, and laugh a lot too, of course. I hope to see you too as soon as I can imagine. Lots of love. Jean-François
DeleteYes he was and it was awful how he died too. Such a lovely looking young man.
ReplyDeleteIf you had to find a positive it was that he had a full life and no illness until that point.
I’ve only just stumbled across your blog Kaye and it’s so beautifully written from the heart. I’ve loved reading about Dom as a baby and then his diagnosis at just 31/2 years old was just heartbreaking. I can’t stop reading this xxx
ReplyDeleteThanks Jayne.x
Delete