Michael, Cameron and Abbie

Michael, Cameron and Abbie

Links to the beginning of the journey .. and info on his siblings heart conditions

Sometimes it is easy to “forget” that Cam has a serious heart condition and obviously someone forgot to tell him as he has more energy than many of us put together & such a zest for life … I remember seeing somewhere a slogan -“ Half a heart – not half a life” and this is certainly true for Cameron.

We hope you enjoy reading his story and that it will give you some hope with the obstacles you may face …

What is Hypoplastic Left Heart Syndrome (HLHS)?

Hypoplastic Left Heart Syndrome (HLHS) is a Congenital Heart Defect where the left side of the heart has failed to develop properly. There are varying degrees of malformation in the Hypoplastic Left Heart. The left ventricle is usually very small or non-existent. The aortic valve may be narrowed or closed and the aorta itself may also be very small. The left atrium is sometimes small and the mitral valve between the left atrium and left ventricle can also be narrowed or closed. These defects put extra work on the right side of the heart, so chambers and blood vessels on this side may be enlarged or stretched larger than normal.


To see the start of Cam's (and our) journey with his heart please
follow this link ...

Cameron's Hearts of Hope web-pages
Some of the photos and story you may find graphic, just to let you know.

Cameron’s twin brother Michael

Michael was also born with a congenital heart defect (CHD) called Pulmonary Stenosis. Up until the age of 2 Michael was monitored 6 monthly by echos and Paediatric visits and then at the age of 3 he was discharged as the Stenosis had corrected to an acceptable level so that it was classified as mild.

What is Pulmonary Stenosis (PS)?

This is where the Pulmonary Valve is thickened and narrowed leading to the development of abnormally high pressure in the right ventricle. The right ventricular wall becomes thickened ("Hypertrophied"). Stenosis (narrowing) of the pulmonary valve restricts flow into the pulmonary arteries. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart

Cameron’s sister Abbie

In August 2006 Abbie was given an echo to check out her heart "as a precaution" due to the severity of Cameron's heart condition & Michael's condition. Unfortunately we were given the news that Abbie has a congenital heart defect (CHD) called Aortic Stenosis. At that stage it was classified as a mild case at this stage caused by thickened leaves of the valve but because of the nature of aortic valves and she had to have frequent echos to ensure that it doesn't get worse, and just stays the same.

Unfortunately with the last echo in 2009 the Stenosis had worsened and has become mild-moderate and she will be reviewed again before she goes to school to decide whether she will need the corrective surgery on the valve. It seems that like Cam that her valve is bicuspid (the valves should have 3 leaves but both Cam and Abbie have only 2).

Aortic Stenosis

The Aortic Valve is thickened and narrowed leading to the development of abnormally high pressure in the left ventricle. The left ventricular wall becomes thickened ("Hypertrophied").

Stenosis (narrowing) of the aortic valve restricts flow into the aorta. This leads to the presence of a heart "murmur". Often the narrowing is mild and does not put significant strain on the heart.

However the narrowing frequently worsens with growth. If the obstruction is severe, symptoms may develop, or the heart may show evidence of "strain". The valve may require treatment to open it up. This may be surgical or with the use of a "balloon catheter" procedure.

SELECTIVE MUTISM

Abbie was diagnosed with Selective Mutism in March 2011 .. following 2 years of kindergarten where she never uttered a word .. towards her going to school she was referred to Special Education and support is now given to her at school.

What is selective mutism?
Selective mutism is a severe anxiety disorder that 7 in 1000 children suffer from (the same prevalence as autism spectrum disorder). People with selective mutism have social or other anxiety so extreme that they are physically unable to speak or otherwise communicate in certain situations, usually school and other social situations, despite being perfectly able to speak and displaying normal social behavior in others, usually home and sometimes a trusted friend's house. The "talk" and "non-talk" zones are different for every sufferer -- for instance, some may speak to friends at school but not answer questions -- and some find it easy to communicate nonverbally or even whisper in no-talk situations while others are all but paralyzed. Some children grow out of their anxiety, while others begin to speak but develop social phobia and still others enter adulthood unable to speak to most people.

"Selective mutism" is far better than the former name, "elective mutism," but it unintentionally perpetuates two misconceptions: that the child can "select" which situations to speak in and that the disorder centers around mutism. In fact, people with this disorder have no control over when they can or cannot communicate (and very much wish they did), and mutism is only the most visible symptom. Most, though not all, selectively mute people have trouble nodding, pointing, smiling, writing, looking somebody in the eye, or using various other methods of communication when they are nervous. Many therapists and parents fail to realize that these anxieties must be overcome before the sufferer can even consider whispering, let alone speaking. Furthermore, "selective mutism" makes no mention of the anxiety that causes the problem, leading to confusion about treatment methods.

This disorder is not terribly rare, yet most child psychologists and speech therapists have never heard of it, do not understand what it is, or have no idea how to treat it. Some children with selective mutism are incorrectly diagnosed with autism or mental retardation. The majority of them are punished for their failure to speak, since their parents and teachers assume that they are able to do it in all situations and that they are simply being stubborn. This makes the child far more anxious about situations in which they will not be able to speak and lowers their self-esteem as it is constantly being pointed out that they are unable to do something that "should" be easy for them. Many children with selective mutism grow up to adults with multiple severe anxiety disorders, depression, eating disorders, and/or substance abuse. However, selective mutism can be cured with cognitive-behavioral and/or speech therapy, medication in some cases, and understanding and support from family, friends, and school officials. Children who had the benefit of early intervention can grow up up to be confident adults.

QUILT OF LOVE

Visit Cameron's Quilt of Love ... here

CHD QUILT
Here is the link to view Cameron's square on the CHD Quilt .. (Quilt 32 Row 6 Square 4). Michael's square (Quilt # 49 Row 6 Column D) is not online .. but is made.

Blog Updates
The latest updates are at the top .. and the oldest are at the bottom.

Wednesday, April 29, 2009

Twins with half a heart each!

Sunday 29th June 2008

Sarah Bland, 24, from Alnwick, Northumberland, was desperate to meet her unborn twins. But then doctors gave her a terrifying choice

The doctor smiled kindly as the nurse wiped the blue gel off my tummy and pulled my top down over my bump.
'I'd like to have a quick chat with the specialist about something,' he said. 'Why don't you come back in half-an-hour?'
I wasn't worried. My boyfriend, Paul Taylor, 32, and I already had one baby, Alex, now 18 months, and we both assumed this extra attention was routine with twins. Like the special 'Echo' scan I'd just had, showing the chambers of the babies' hearts.
I'd met Paul in September 2003, when we both worked at Newcastle Airport — me in one of the airport shops, and him as a ramp agent, shunting planes around on the runway. Three years later, we had Alex, and when he was just a couple of months old, I fell pregnant again. Once the shock had passed, Paul and I were thrilled. And at my 12-week scan, there was another surprise, when we discovered I was carrying twins.
So here we were, eight weeks later, in July 2007, sitting in a quiet room at Leeds General Infirmary, waiting for the doctor. But when he came in, his face was serious.
'I'm so sorry,' he said. 'I have bad news. Both Baby One and Baby Two have problems with their hearts.'
We sat there in shock, as he explained the twins had a rare condition called Hypoplastic Left Heart syndrome.
One of the main pumping chambers on the left of each of their hearts was too small, making that side undeveloped and weak, while the major aortic valve was too narrow. Once they were born and no longer got their oxygen from me, neither of them would be able to pump enough oxygenated blood round their bodies to survive.
The twins weren't identical — they'd been conceived with separate eggs and each had their own placentas. How could both of them have only half a working heart each? The doctor couldn't explain it.
'What can we do?' I asked.
'You have three choices,' he said.
The first was a termination, even though I was already five months gone. The second was to allow the twins to be born, only for them to die soon after birth.
'What's the third option?' I asked, desperate for hope...
'There is a possibility the twins could have an operation as soon as they're born,' the doctor explained. 'But the aortic valve which leads out of their heart would have to develop to 3mm in diameter.'
Of course, we grabbed that third option, but it wasn't that simple.
'I have to tell you that the valve is unlikely to develop enough in time,' the doctor said. 'You need to seriously consider the other options.'
How could we choose between a termination or seeing our babies die as soon as they were born? We had two weeks to make our decision, so a few days later, we went to see a counsellor at the hospital, who explained what a termination would involve. Doctors would insert sulphur directly into the babies' hearts, stopping them instantly.
'Can the twins feel anything yet?' I whispered.
'At five months, their nervous systems are developed, so I'm afraid the honest answer is yes,' the counsellor replied.
A termination felt impossible. But the second option seemed just as terrible— giving birth only to watch them die. Paul and I both knew what we had to do.
'We want them to have the operation,' we said.
On 11 October 2007, I was induced at Birmingham Women's Hospital. The labour was easy and the boys were born just after 8.30am, 13 minutes apart. Stefan, came first, weighing 5lb 10oz. His brother, Sebastian, was 5lb 2oz. When the midwife put them on my chest they looked perfect. But after just 10 minutes, they were whisked away to Birmingham Children's Hospital, while I stayed at the Women's Hospital overnight. Paul went with the boys and, sick with worry, all I could do was wait for him to call.
It felt like an eternity.
'How are they?' I demanded, when my mobile finally rang.
'They've had their heart scans,' he replied. 'Their aortic valves are exactly 3mm.'
'Thank God,' I whispered.
It was just enough to persuade the doctors to go ahead with the operation. Surgeons would insert a shunt into both the boys' hearts to keep their aortic valves open, allowing oxygenated blood to flow around the body. I was discharged from the Women's Hospital, and was there when Stefan went into surgery.
After five agonising hours, the surgeon came to see us.
'The operation has been a success,' he smiled.
But we couldn't relax — 24 hours later, Sebastian would face the same procedure. He was smaller than his brother, but he sailed through, too. After that, they just grew stronger. Four weeks on,
we took them home.
They each underwent a second major operation in April, as they had begun to outgrow the shunts fitted at birth, and they'll need a third and final op between the ages of 3 and 5. But although
they'll have to have twice-yearly check-ups for the rest of their lives, they shouldn't need any further operations.
Now eight months old, Stefan is always smiling, while Sebastian is the explorer. They may be different, but there's an extra special bond between them. They may only have half a heart each, but they're real little fighters. One day, we'll tell them just how lucky they are.

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