Corwin's hospital Appointment

just wanted to update as Corwin had a clinic appointment and am so pleased how it went! It was an interesting appointment!

I think our prayers have been answered as his valve leak has gone!! It has leaked since birth and has got worse with each surgery..His new medicine (captopril) is magic stuff! His sats were 81% and he weighs 22lb!

We saw our consultant but we spoke mainly to a new registrar who was great! He spent a long time looking at Corwin's scan and explained yet again to us his complex heart...we were previously told Corwin has 'Tricuspid Atresia , but not tricuspid atresia' and asked him to explain this!! He said that Corwin has a 'uni ventricular heart' and he is totally missing a ventricle and has only one atrium. Literally half a heart. The ventricle is rudimentary , so impossible to know whether he is missing the left side or the right side of his heart-One is missing anyway. His one and only valve could be a tricuspid or a mitral valve, so they call it an AV valve. His Aorta and pulmonary artery each lead off from the wrong side of the heart so they are transposed (TGA).

The registrar said he is doing so well. So pleased with my little man! A bit confused that his heart could be hypoplastic left or right but never mind! It is beating and he is with us and happy.

abi x

PS the photo above is of Corwin dressed as a frog for his cousin's birthday party!

Corwin's second holiday!

Hello again! Just wanted to update you on our recent holiday disaster!

Myself, Corwin, my sister in Law (Lisa) and my niece (Cerys) booked a week in a caravan on the east coast...just a little break for the children..we thought! On the first day I locked my keys in the car boot and had to call out the AA - very embarrassing!On day three Cerys was bitten by a dog so we had a trip to the local doctors. She was fine -just a little shocked with a cut finger. On Day four we had to come home early as Corwin had a nasty case of gastroenteritis and a chesty cough. Poor little man was not happy at all. By this time the weather had turned wet and so we were confined to a small caravan which was not nice when your little one has sickness and D!! I got him to the doctors on our return home and she prescribed him Antibiotics for the cough just to be on the safe side given his heart condition.



The first few days of the holiday were fun though! Corwin enjoyed a little dip in a nearby paddling pool and lots of naps in his pushchair along the sea front! He was babbling a lot on the holiday which is great as he has just been referred for speech therapy as he behind with his speech and not great with his food.



He has had a few days at home now and is feeling much better!



Not the best holiday ever, but thank goodness he is OK.







abi x

Happy First Heart Day!

Happy First Heart Day Corwin!

It is a year ago today that Corwin had his first Heart Surgery. You can see how far he has come from the photos below taken before surgery, a few days after and today.

Well done Corwin! You are a star!

abi x

Corwin's First Holiday!

Corwin had his first holiday this month! We went to Norfolk and stayed in my parent's caravan on a lovely camp site in the forest. We were lucky with the weather and were able to take Corwin on the beach for the first time and for a swim in the heated outdoor pool onsite. He loved picking up the sand , but wasn't too sure about the noisy sea when we took him up close! He loved the pool and stayed quite pink in his swim seat and wet suit. He was very cold when we took him out and needed lots of cuddles to keep him pink.

He was able to meet his great grandparents for the first time also!

He was such a good boy for the entire trip. He slept well, didn't cry once and didn't mind the long journey. We made sure he had a good sleep each afternoon in his cot which I think helped.

Hope you like the photos!

abi x

Clinc appointment and our little star

Corwin had a cardiac clinic appointment today...the big check up with his heart consultant including a heart scan (echo). The consultant was very pleased with his progress! Without going into too much detail, he had a leaking valve and a dilated left ventricle ( his only ventricle) and both of these have improved! His Sats (oxygen levels)were 82% (100% in a healthy person) so a good level for his condition at present. I asked the consultant about life expectancy and he said there are children now reaching adulthood who have had the three stages of surgery and they are living a good quality of life. Corwin has a long way to go, but if his next op goes well we have every reason to hope he lives to become a young man.

Well done Corwin, my little star who amazes us each day!

abi x

please feel free to leave a message!

I have put a photo at the top of this post showing our little star in the local paper!

About Corwin!

I thought this blog was missing some waffle about what Corwin is like!! Ofcourse I cannot stress enough how amazing he is, but I will try and sum up his personality!

Corwin is a very laid back little boy! He doesn't trantrum (yet!), he has patience and seems to have a very watchful eye. We call him our little proffesor as he seems to study objects and people a lot. He will hold objects and turn them round and round , up and down , trying to work out what they are for. He loves anything with buttons to press.
He loves other people so is very easy to take out and about as he will enjoy looking at new strange faces. He is quiet , but not timid.
He is developing a little sense of humour and likes to pull faces if he has had enough of his drink and then grin at me! He knows he is being a cheeky so and so!
He has discovered gravity and loves to push things off the table onto the floor and throw his building blocks...not something I taught him!
He loves going to bed and I leave him smiling each night as he clutches his hands together over his head. He started sleeping through at 8 months although I have to give him medication at 1am so I am not!

He is such a gorgeous little boy who is very cuddly and loving! Amazing little man!

abi x

Corwin First Birthday!!!

My little man turned one on Wednesday! He had a party on the Sunday before, which was meant to be a Teddy Bears' Picnic, but in true bank holiday fashion it rained, so it was more of a chaotic indoor party with teddies here, there and everywhere! Poor Tom had to stand outside and BBQ! Corwin seemed unaware of all the fuss and just enjoyed looking around at all his friends and family. He is a very laid back little boy and did not find it overwhelming at all.

On his actual birthday, we took him to the zoo! He enjoyed watching the monkeys but banged his head on the glass as he leaned in to get a closer look, he was brave and manged to hold back tears. From late afternoon through to the evening family popped round with presents. He was completely spoiled and I have 26 thank cards to write!

He had too many presents to list here, but we redecorated a room into a playroom for him. What a spoiled little man!

It was quite an emotional week, he has been through so much and we are so grateful that he is here with us. I kissed him goodnight and asked him to be here for lots of birthdays X

May 2007

Corwin is now nearly one!! He is doing very well and we do not expect any surgery for at least two years. His physical development is a little delayed, but that is no surprise given what he has been through. He has just started to sit nicely on his own and is beginning to bare weight on his legs. He has a lot of medication throughout the day and night, but it is easy to forget his condition.

We are so so proud. I will use this blog to keep you updated!

abi x

Second Stage, February 2007

Corwin recovered very quickly from his first stage heart surgery and we were able to enjoy our little man. He had special milk to help him gain weight for his next operation , and he had medication for reflux.

In December 2007, at nearly 7 months old, Corwin had a heart catherisation (key hole surgery) to meassure his lung pressures and perform an angiogram (dye injected into the heart to get a clear picture of it's anatomy). Again we had to kiss our little boy goodbye which seemed just as hard as before. Corwin suffered a heart block during the procedure but thankfully they were able to get his heart rate steady very quickly. He recovered quickly and was home two days later! What a star!

The results of the catherisation were that Corwin needed his second stage soon. On Febraury 19th 2007 we kissed our boy goodbye as he was put to sleep yet again. It was harder than before as this was by far the riskiest surgery he had gone through. His heart would be stopped and he would be put on a heart lung machine. This surgery would reroute his upper body blood straight to his lungs and widen one of his holes.

This surgery was not as straight forward as planned. Corwin had very high lung pressures during surgery( dangerous for this type of surgery). They also struggled to get Corwin off the heart lung bypass machine.

We saw our little man, full of wires on life support , 7 hours later. He looked so poorly.

After a few days it was clear that he was not getting better. He had a nasty chest infection and fluid on his heart, brain, liver and lungs. His head was very swollen. He was not breathing for himself. He was unable to move his left side and had seizures. The doctors belived he had suffered a stroke.

After three long weeks, Corwin was well enough to come home. His recovery had been slower than expected, but considering the set backs, he had done very well.

We were so proud of our little fighter!

May 30th 2006 to First stage operation

Corwin is born!!

I was induced into labour so that there would be a neonatal team to look after Corwin as soon as he was born, a bed availlable in neonatal intensive care and a bed at Glenfield hospital where a team of cardiologists would look after him.

After an easy and quick labour, Corwin was rushed to a trolly to be assessed, he was wrapped up and handed to Tom who placed him in my arms. We had a couple of minutes with him, he looked perfect!!

He was taken to neonatal intensive care and given a drug to keep a duct in his heart open. He was very stable so he wasn't transferred to Glenfield until the next day, I was discharged just hours after giving birth so I could be with him.

He spent a week at Glenfield hospital. His heart function was good so there was no need to operate at this stage. We were sent home and asked to look for signs of heart failure ( breathlessness, blueness, sweating).

We couldn't believe our baby looked so well!

At 6 weeks old he was looking thinner and had lost weight. He was sweaty and sleeping lots. He looked very pale and blue around his lips. Corwin was in heart failure. He was admitted into hospital. After a week Corwin had his first operation. He had a band fitted onto his artery leading from his heart to his lungs to artificially narrow it as there was too much blood in his lungs which was causing the heart failure. We kissed him good bye as he was put to sleep. This was so hard. After 6 hours we saw him again. He had been out of theatre only a short time when his heart rate had dropped and he was given heart massage to keep him alive. He recovered and was out of intensive care the next day! Five days later he was home, putting on weight and staying awake longer.

At just 8 weeks old he had overcome so much already. Our little miracle.

This is Corwin's Website!

This is a website for my son, Corwin Thomas Meynell, born with a complex congenital heart desease. In short, he has just half a heart. He will need serveral operations that will not cure his condition but will help him live a longer and better life.

This Blog will be a diary of his progress. A place for those who know him to keep up to date with his progress and learn a little more about his story.

I am having to back date this diary by one year, so excuse the rushed posts early on!

abi x

January 2006

January 2006, two excited 'parents to be' off to have their unborn child scanned at 20 weeks into the pregnancy. They were myself, Abi 25, my husband , Thomas, 25.

As the sonographer scanned me we asked to find out the sex of the baby...a boy! Visions of my son playing rugby flashed through my mind! I was asked to go for a walk as the baby was lying awkwardly so the nurse was unable to get a good picture of the heart. Off we went, still excited. There were two people at the second scan looking concerned, then a third, then we were told that they could only see half of the baby's heart and they were sure that our baby had a hypoplastic right heart ( a tiny right side).....

.... a scan with a consultant two days later confirmed this...we were given the option of a termination , but we wanted to see a specialist first...off to Brimingham...I was scanned by a cardiologist and given the news for certian ( we had been clinging onto the hope that this was all a wrong diagnosis). Our baby had a small right ventricle ( pumping chamber) , two holes, his arteries were the wrong way round and he had a valve missing. This condition was labelled 'Tricuspid Atresia'. We were given three options: termination ( a still birth at this late stage); allow the baby to die naturally after birth; or three stages of surgery that would not cure the condition but would help our child live a better and longer life. The longterm outcome, and our child's life expectancy with these surgeries was not known. The consultant said he had many patients about 12 or 13 years old who had has the surgeries, but sadly he had also lost many patients.

Surgery was our decision. We wanted to give our child every chance to live a happy life, no matter how long that would be. There would be no rugby for our little one, but we decided he will play golf! Ofcourse it felt like our world had collapsed around us, but we stayed strong and hoped that some clever surgeons would work their magic and we would have a very special little son, our little miracle.