Emma Grimshaw's Story...

This is Emma Grimshaw's story about her son Finlee...

When I found out I was pregnant it was a bit of a shock. I wasn’t in a good place at the time, but I thought I couldn't end it so I started to turn my life round. The pregnancy went well and the 1st scan was great. I could see this tiny little baby inside me growing away, I was very lucky as I didn't show that much when I was carrying Finlee and the midwife said I had good tummy muscles. The 2nd scan came and there was two of the Drs sat in the room and said everything was going great and they could see four chambers of the heart and that was that. They did all the other stuff they normally do in the scans and they then said they were happy and could I go. The last few weeks seem to drag and then the time had come - it all started and I was in labour for 4 hours (seemed like a life time) and then Finlee was here and I met my little boy for the 1st time but he was blue and he didn't hold his temp very well but they didn't seem to worried. He didn’t even feed from me for over 12 hours! All they did was tell me to put more clothes on him and put him in an incubator. After a while his temp picked up and they brought him out but his temp dropped again, so they just put him back in - that happened a few more times and then he did hold his temp but was still blue. After 2 days in hospital we were allowed home, which was great. My mum also booked time off work to help me out - being a new mum that couldn't even change a nappy before I had Finlee! A few days passed and he was still blue but his body was warm. I had a health visitor come round to do me a ‘show bath’ and I asked her why my son was so blue and all she told me was that he was fine in his body temp so not to worry. Then it was day 9 and in the morning Finlee let out this cry which was not right; I told my mum and she said see how it goes but he was then sick as well (he was not a sicky baby) I was just worried and after dinner that night I was at my mum and dad’s and called the out of hours doctors and they said if he was blue then call 999 and if you don’t do that then make your way to Torbay hospital but as we were told he was fine we did not call 999. When we got there the doc looked at him and said I want someone else to see him, that was it - they had him in there arms running through A&E to resus and there were 6 to 8 doctors and nurses round him and I was just stood there in shock. What the hell was going on with my son? At this time my dad was in the waiting room with all mine and mums stuff and the nurses started talking to me but I couldn't take it in - all I heard was his heart, I was in shock I left mum with Finlee and the doctors and walked to my dad. I was in tears and couldn't talk, my dad was saying what is going on and the A&E waiting room was full and all I could say was it is his heart, dad left me and went to find my mum and Finlee. We were put in to a side room and a doctor came after a few hours to say what was going on but I still couldn’t take it in, he was sent to ICU over night and was taking by blue light to Bristol Children’s hospital the next day. I didn't sleep that night just sat next to him in ICU, my mum and dad picked me up the next day and we had to meet Finlee at Bristol as I was not allowed to go with him. When we got there we were sat in a side ward with Finlee and a doctor came though and told us that Finlee had pulmonary atresia with vsd and he was sick and that if we had left it another 24 hours he would not be here. And that was the start of our CHD journey...
AT 13 days old, Finlee went to have his right BT shunt. We took him down at about 12pm and we didn't see him till about 7.30 pm as they got one number wrong in my phone number. He had a short episode of bradycardia with a drop in bloody pressure, immediately after the op CPR was carried out for 2-3 min, he also needed a blood transfusion. He was in PICU for 5 days when he should have only been there for 2 or 3 days, when up on the ward Finlee was not able to put any weight on and dropped some days but after 2 weeks he started to put on and we were allowed home. I went back to my mum and dad’s for a few months so they could help me out. In March he was started to get really sleepy again and going blue so we went back down to Torbay and his saturation levels had dropped from 80s to 50 and 60s again so he was taken back to Bristol, but because he had a slight cold he could not go on the heart-lung machine and he needed another shunt - this time on the left. After the op he was a lot better and only in PICU for 3 days, but it nearly didn’t last as we went back up on to the ward the 1st night was fine but the 2nd he was being sick all the time I asked if this was right but they didn’t seem too bothered but by the morning he was really bad and was put in to his own room. Then it got really bad and his temp hit 40s and was not keeping anything down. I had new doctors in and even the team from PICU in and out the room for 24 hours, he had got rota virus and almost ended up back down in PICU as he was that ill and only being 48hrs after coming back up from there. He settled after 5-6 days on supportive therapy, again with this his heart rate went up to 196. Since he has been home he has been fine but is now due for his OHS - he was due this on the 20th Sep but he got taken ill and spent a few days in Torbay hospital, but we now have a new date for 8th Nov and so far he has been well.

Thank you so much for sharing your special story!!

Angela Carroll's Story...

This is Angela's story about her baby girl Isla! Thank you for sharing your story and pictures Angela.

*Please be aware the photos contained in this post are very upsetting*

When my partner and I went to my anomaly scan at 21 weeks I was so excited to see how much our baby had grown since our earlier scan and this being my 2nd baby, I knew how much baby's grew and how amazing this scan was!
Everything was looking good except our baby wouldn't turn around to get a good view of its heart, they tried for half an hour then said we will try again in a few days. We came back after a week only to experience the same thing, we tried everything to make baby move, jumping, drinking fizzy drinks but no, my baby would not budge!! So we gave up but they wanted me to come back again in a week! This time my partner couldn't get more time off work so I went on my own - I was starting get used to it now and remember joking around and saying so is baby co-operating today, the Dr just said yes and seemed a little serious suddenly making me feel very nervous, so I asked is everything ok?? The Dr said I just want to get someone else to have a look as I'm still not getting a great view of the heart, I still felt slightly uneasy but just thought it was baby playing up again. Another lady came in the room smiling at me and stared straight at the screen for what felt like ages and then said the words I will never forget "you’re baby has a heart condition!!!!! I am more than sure it is a CHD called Tetralogy of Fallot" I remember thinking sorry what??!! My baby has what!!?? What does this mean?? Will my baby survive!!?? What can I do!? Can I still have my baby?! Heart condition ..... is my baby going to die!!?? And then blurting it all out at once through streams of tears!! That day a piece of my heart broke!
I was then sat down and things were explained a little more, I then met a specialised midwife who explained things more, gave me lots of information and told me I would be going to the Royal Brompton hospital the next day to find out exactly what this meant and what would happen. I left the hospital that day not really understanding much except that my baby had heart condition and would need open heart surgery in the 1st year of its life. I phoned Ted (my partner) and through tears told him the news trying to explain something I didn't really understand!
Over the next few months we learnt all about our baby's heart condition and about the open heart surgery that they would have. Doctors at the Royal Brompton and the specialised midwives actually everyone we met were amazing and we could ask anything we wanted, many times over and over again and they would always answer them in detail. We learnt all about Tetralogy of Fallot (TOF) and now I will explain it best I can.....It has 4 problems with 2 main problems -
1. The main pulmonary valve is narrow (pulmonary stenosis) and the muscle below it is thickened.
2. There is a large -septal defect or VSD- between the 2 main pumping chambers of the heart (the right and left ventricles)
It also includes an overriding aorta and the right ventricle is more muscular than normal.
In normal circulation, blood passes through the lungs to collect oxygen. In babies with TOF the narrowing in the pulmonary valve and the thickened muscle below it mean less blood can flow through to the lungs so oxygen levels in blood are low.
On the 25th march 2010 at 2.25 pm Isla Grace Stonebanks was born very PINK, crying and beautiful. I got to hold her and her big sister Hazel got to come and say hello before she was taking with Daddy to NICU. Isla surprised everyone and only spent one night in NICU and then came home which I have to say we were quite nervous about! Isla was kept a close eye on; weekly visits from nurse checking her saturation levels and heart rate. Isla was also given blood tests in 1st few weeks to check for a chromosome disorder called DiGeorge syndrome which is related to CHDs especially TOF and the test came back positive, this can mean many things that we won’t really know until Isla grows up such as slower development, having speech difficulties and more. It is also the cause of her heart defect as it is a structural disorder, we later found out the Isla has a small cleft palate also related to DiGeorge and heart defects. Isla continued to do well but her saturation levels were slowly dropping and her colour getting greyer but we were lucky and had no blue spells, but it was obvious that it was getting close to surgery time. We received a phone call and told that surgery would be on September 1st!!! After a night in hospital, chest x-rays, blood test, ECGs and echo’s the Doctors came in on September 1st to tell us Islas white blood cells were high indicating an infection so surgery would not take place! I was actually so relieved I could have run out of hospital and we pretty much did! A week later we had another phone call and surgery would take place on September 15th.
On the September 14th we went back to the Royal Brompton, but we didn’t have to do all test again except Echo and blood tests and everything looked good to go ahead but this time I was pleased, I didn't want it to be cancelled again. I wanted to get it over and done as I was petrified.
The next morning we were both so scared and I just held Isla until the surgeons came and said they were ready. The walk to surgery holding my baby was a very long walk, feeling very sick. We arrive at theatre, my heart was pounding. Isla looked very unsure of her surroundings; I sat down on a chair and held her, tears streaming down my face as they put my baby to sleep. Ted and I then kissed her goodbye and left her. That day another piece of my heart broke. It was nearly 6 hours before we saw Isla again. We were told by the surgeon that everything had gone well and they had also closed a large ASD- a whole between the top to chambers of the heart.

Nothing could have prepared me for seeing my baby in intensive care covered in wires, tubes, and machines and surrounded by doctors. But I was so pleased she had made it out of surgery. The next 2 weeks were the longest of my life and I will never forget but slowly our Isla came back to her old self BUT pink again!! I will never be able to thank the Royal Brompton for saving my baby's life!!! THANKYOU.
Isla continues to do well and has an amazing scar to show the world everything she has been through and how amazing she is! OUR HERO!!
We go back to hosp on September 26th to find out how successful surgery has been. Isla has come on leaps and bounds in just 2 weeks since surgery she has so much more energy and is awake more, she is rolling around and the best thing of all is she has said her first word, mum..........just what I need after everything!!! We love you our heart hero Isla x x x x

Alison McGough's Story...

This is the journey of Alison's little girl Brooklyn, written in Alison's words...thank you for sharing your story with us!

'My daughter was born on December 9th 2002, she was my 1st child and was 3 days late and 8.11lb's – big and healthy we thought. The nurse heard a murmur but the Dr said she had heard wrong and there is nothing wrong with your daughter, so we took her home. She was 9 days old when she turned gray and let out an adult cry. I called that Dr and at 6:15pm that night we went to his office. He then told us she might have an infection and we should take her to the hospital. He told my husband to take us because we would be faster than an ambulance. By the time we made it to the hospital 20 minutes later she had crashed. There were 13 people around my baby shaving her hair and working on her. We were moved to the private room where they told us she probably will not make it. But there was a Dr that was able to run a line through her umbilical cord to her heart and keep her stable so we could fly her to Ga. children’s hospital.
She had 3 open heart surgeries by 8 months old; she was tube feed for the 1st year due to her left vocal cord that was paralyzed from the heart surgeries. She is now almost six and even though we were told that her mitral valve would last till she was 60 years old it is now failing. They need to do surgery now but the death rate is very high for children under six and she is only 31lb and very small for her age so the Dr’s want to wait till she crashes and now I am back in the really scared stage again. They need to put a mechanical mitral valve that will have to be replaced in 10-15. Also when she decides to have a child they will put a tissue valve in her because it is safer during pregnancy due to the medication couminden. I know that technology can get better to. She is also due at age 10 to have a cadavers valve replaced to a bigger one. As of now her cadaver valve is from a 6 month old.
When my daughter Brooklyn Ann was a baby, I lived on the internet reading stories about children with Shones Complex. My husband got rid of the internet which was the best thing for me. It has been 5 years without the internet and I just got it. As you see I’m back on the sights. I just pray I do better this time. '

*This is a quick thank you for the beautiful picture that is on the top of my blog...the lovely Holly drew it for me, so thank you for doing that - you are very talented!*

Hole in the heart...

The most common heart disease is possibly a hole in the heart. A hole in the heart is where there is an opening in the wall (septum) between the chambers of your heart. It may be between the two top chambers (atria) or between the two bottom chambers (ventricles). Babies are born with holes in their hearts due to not developing in the womb normally. There are three types of holes in the heart you can get, there is Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD and Atrioventricular Septal Defect. When I go into the more detailed heart diseases you may hear me repeat these names, this is because as well as more serious heart problems, heart babies may also have holes in their hearts. A hole in the heart is easily treated when it is the only problem a baby has and some holes are so small that they cause no problem, and are left alone. Some holes in small babies may close by themselves: if the cardiologist thinks this is likely, he will not close it immediately, but wait for some time to see if it has closed by itself, by repeating an echo.
Other holes must be closed, either because they are already a problem, or because they will cause a problem in the future. There are two ways to do this.
The first way is via an operation called catheterisation. This is when a cardiologist puts a tube into your leg that goes up towards your heart. He can then put a device through that tube so that it fits into the hole. When it’s in the right place, the device opens like a little umbrella, and blocks the hole. The device stays inside you forever.
This is quite a quick and simple way to solve the problem. However, sometimes this is not possible, because of the size, shape or position of the hole. In these more complicated situations, a surgeon will perform an operation where he puts a patch over the hole directly.
Most patients who have ASD/VSD corrections go on to lead perfectly normal lives. You will be followed-up for a short period, but if everything's OK after a year, you probably won’t need to worry about it ever again. It also doesn't increase the chances of you having any other heart-related issues in the future, but you should take regular exercise and aim for a healthy diet.

*I am not a professional nor do I claim to be. If you are worried about heart disease please seek medical advice. The purpose of my blog is to raise basic awareness of heart disease. *

Understanding heart disease in children

Hey everyone,

I've started this blog because 7 children in one week died of CHD (congenital heart defect).

Most of you probably believe that heart disease only affects older people or people who eat poorly or stressed people. You wouldn't be wrong in just believing that affects those types of people but you would be very naive to believe heart disease was as simple as the media portray it.

You are likely to be aware of adult heart disease such as strokes and heart attacks. Although these are very serious heart problems, it is unfortunately not one of the more complex heart problems. I want to show you all through this blog what you don’t know about heart disease and why it is time you all knew how badly children suffer from it - they need the money for research for cures and more ways in which doctors and surgeons can save their lives.

Those of you who have lost family members from strokes or heart attacks may recall the pain you felt at that time, well for the CHD children, having a stroke is something that could happen during surgery and quite often does happen. Please do not get me wrong, it is still terrible for anyone to suffer with a stroke or heart attack and I am not suggesting they are not worthy to have funds raised for them – they certainly are! I used to volunteer at ‘The Heart Foundation’ shop near to me for these people, but I am using them as an example to portray the severity of children’s heart diseases.

I want you to understand heart disease in children, so you'll want to help...