Ryders Brave Heart, a True Story of My 5 Year Old Son With Congenital Heart Disease
Ryder's Brave Heart is a true story about my 5 year old son, who was born with major congenital heart defects.
The reason for my story is to hopefully provide people with a better understanding of congenital heart disease and how it affect families. This is also a a great way for me to document Ryder's life for all my beautiful friends and family who have given their love and support over the years.
Ryder's story is a personal story about his journey from birth until now at 5 years of age and the multiple heart operations he has had to endure.
Ryder's condition was not picked up throughout my pregnancy however my intuition told me something was not quite right and Ryder would have mostly likely have died in his sleep within his first month if I did not take him back to hospital.
I hope that this hub gives parents hope and faith and that they will find the tips and tools to be helpful.
I wish I had been given some of this information when I first found out about Ryder's condition.
It should also inspire you as it shows how brave and truly remarkable little Ryder is.
By looking at Ryder now you would not even know that he lives off only one heart chamber. He is a real character and runs around and always makes people laugh. It has not always been happy times though as you will read throughout Ryder's story.
I hope this hub is enjoyed by all, donations to Heart Kids is greatly appreciated.
Did you know that 6 babies each day in Australia are diagnosed with heart disease
Ryder 9 days old
Ryders birth and first few weeks
On the 5th July 2006, about 20 long painful hours had passed, when all of a sudden out popped Ryder.
To my suprise it was a boy, but even more astonishing was the bright red hair and dark blue piercing eyes.
Ryder looked strong and healthy, weighing in at 9 pounds.
It was me (mum) that was having the problems, the placenta was stuck and I had lost a lot of blood. I had to undergo a blood transfusion and was exhausted. All the more reason I just wanted to get out of that hospital.
After day 4 I had had enough. Ryder looked quite jaundiced and tired but the nurses and doctors did not seem to be too worried. When the doctor checked over Ryder for our departure he said that it sounded like Ryder had a heart murmur, and we would need to see the visitng cardiologist next time he was in Cairns which would be in a few weeks.
Although my husband Tony and I were a little concerned about the heart murmur we had heard it all before, you see when our first born son (then 2) was born we'd been told he had a heart murmur however it ended up being nothing.
So off we went home. Yippee!
I awoke the next morning, feeling edgy and anxious. All Ryder seemed to do was sleep. I spoke with my mum who said "that's what babies do, eat, poop and sleep" but all I can say was with Mother's intuition I knew something wasn't quite right.
Being a second time mum had really helped with this intuition as I sort of knew what to expect. First piece of advice is if you have any concerns about your baby or child, even the slightest, then go immediately to your doctor. I would rather be an over cautious mum than not detect something was wrong. There have been many cases that heart babies have been born and died when problems were not detected. Parents should not feel that they are to blame.
I took Ryder to my local doctor who immediately said that Ryder had jaundice and had to go back to hospital to be put under lights. I had experienced this before as my first son was also jaundiced. You know its funny because with my first son these things were major emotional deals. I remember seeing him in ICU in the plastic humidity crib under the lights with the mask over his eyes and all I could do was cry, but second time around you have dealt with it before and it makes it easier to deal with again.
I drove to the Cairns Private Hospital and checked in at the nurses station. The friendly nurse welcomed us both and advised me that she was the head nurse and had been away on holidays while we had been in there. She then showed us to our room and went over the paperwork asking me what my concerns were in regards to Ryder.
I explained that all Ryder seemed to do was sleep and I even had to wake him to feed him but he really wasn't interested in feeding. The nurse said she would run some tests and came back with some sort of machine that she wheeled over to the bed. At the time I had no idea what that machine was and the nurse never explained anything to me. She put a little probe on Ryder's toe and watched the numbers come up on the digital screen. I didn't really notice at the time but the nurse then scooted out and called for the doctor.
Within a couple of minutes I had about 5 doctors and nurses around me in a bit of a panic, I knew then something was definately wrong. My pediatrician came to give me the bad news. He told me that Ryder's oxygen saturation levels were very low (60). I asked what is the normal level and he said 100, so he was only getting just over half of the oxygen he required.
For anyone wanting to keep track of their child's oxygen saturation levels there is a great affordable portable monitor that you can purchase for only $18.98, if you would like to check it out, click here It is called a Finger Pulse Oximeter and it monitors the blood oxygen saturation levels. I would highly recommend this for peace of mind.
The pediatrician listened to Ryder's heart and told me that he thought that Ryder had a heart condition. The next 12 hours is a real blur, it seemed to go on forever. Ryder was getting poked from every angle to get blood tests and he was clearly distressed and upset. I had called Ryders dad and the grandparents and told them the news. I don't really recall how I felt at this time I think I was in deep shock.
The visiting cardiologist was flown up from Brisbane to see Ryder and we were transferred by Ambulance to the ICU at Cairns public hospital, where Ryder was put in a humidity crib and given oxygen. We were told that we were to be put on a flight to the Prince Charles Hospital in Brisbane as soon as possible.
The cardiologist finally got to us, and did an echo on Ryder. He explained that Ryder had quite a few heart defects the main being transposition of the greater arteries and also a few holes in his heart. He said that modern medicine has changed a lot in recent years however statistically children with this sort of condition would not last until their teens. Imagine hearing this about your baby. My head was spinning. I had no idea what the cardiologist was talking about, as he used a lot of medical terms that went straight over my head.
There is a book called The parents guide to Childrens congenital heart defects: What they are, How to treat them, How to cope with them, cost $34.42, and definately worth reading.
My husband, Tony was trying to be strong but I could see the pain in his eyes. My mum and mother-in-law were clearly distraught but really tried to hide their emotions.
Tip: The 20 week pregnancy scan is where they check the babies heart. Please if you are expecting a baby make sure this check is done thoroughly and ask a lot of questions as congenital heart disease is the most common birth defect.
Obviously no problems were detected in my case however I truly believe that in my case there was a reason way bigger than I thought. Ryder has brought me close to God and has taught me to really appreciated life and see it in a different way.
It was now about 10pm, we had been in hospital all day, the doctors explained that they had a private jet coming to take Ryder to Brisbane and he would need to be taken in a special transport crib with oxygen and sedated for the travel so that he did not move.
I was not leaving my baby, I managed to squash into the tiny plane with only one seat that was jammed right up the side and squashed in by Ryder's crib. That flight seemed to take ages. We finally got to Brisbane airport at 5am in the morning and there was not enough room in the ambulance for me. I had to let them take Ryder away while I waited for a taxi, that was one of the toughest times of my life.
When I finally got to the Prince Charles Hospital, I was told that Ryder had been taken to the special care unit for cardiac children. This was a very sterile and emotional place. I still remember looking around at all the babies and seeing the pain in their parent's eyes. The machines and alarm bells that went off were so scary and drove me crazy over time. The nurse's in special care are very good but they deal with it everyday so they don't really understand how terrifying it is for a new parent. Ryder was scheduled to have a full echocardiogram the next day and then the cardiologist team would get together and discuss what had to be done.
An echocardiogram is a test in which ultrasound is used to examine the heart. It allows accurate measurement of the heart chambers, the echocardiogram also offers far more sophisticated and advanced imaging. This is known as two- dimensional (2-D) Echo and is capable of displaying a cross-sectional "slice" of the beating heart, including the chambers, valves and the major blood vessels that exit from the left and right ventricle
My husband had to stay behind at home in Cairns as we had a family business and a two year old son that was already confused as to was going on. My mother flew to Brisbane the next day and was able to stay with me for just over a week. I really do not know what I would have done without my mum during this time. My husband rang a hundred times a day but I was never able to give him much information as the doctors didn't tell me anything at this stage.
Five days had past with Ryder in special care and I was not able to even hold him. My emotions were going crazy. The only thing that kept me going was that I needed to be strong for Ryder and the best and only thing that I felt I could do for him was express my milk so that when he was able to feed I would give him a good start to life. This was really difficult at times as all I wanted was to hold Ryder in my arms and feed him myself. I knew that this probably wouldn't happen for a long time but I really persisted and had a freezer full of milk.
Finally the cardiologists had discussed Ryders case and had now told me that he had a few more defects. They explained that Ryder's main condition is Transposition of the Greater arteries where the main pulmonary artery and aorta are coming out of the heart chambers the wrong way around and in normal cases the operation to fix this would be to switch these back to the normal way. Oh, great! Sounds easy I thought,... NOT. They then went on to say that in Ryder's case his right side of his heart is not functioning and he has hypoplastic right heart syndrome. Unfortunately this meant that Ryder could not have the switch operation to make his heart function normally again. He also has a few holes in his heart both ASD and VSD and a Tricuspid straddling valve.
The cardiologists and surgeons decided that they would need to first make another hole in his heart, I know this sounds strange but they said that it would help with his blood flow. What do I know? I thought having a hole in the heart was quite serious but in Ryders case this was actually helping him.
I phoned my husband and he booked on the next plane to be with us. The generosity of our friends and family was amazing. Our local chuch Northpoint Cairns had raised $1000 for us and also organised a car for us to drive around in while we were in Brisbane. Our friends Mick and Karina offered for us to stay with Micks brother in his house that was only 5 -10 minutes from the hospital. Mum and I had been staying in a hotel and had been walking every day to the hospital so this generosity made our life a bit more bearable.
I think the most frustrating thing about being in hospital was that you were only told one step at a time. When I asked about Ryder's future the medical team would not discuss it and I suppose that they really didn't know how he was going to be so couldn't give any false hope.
I still remember one day when Tony and I were visiting Ryder in the special care unit (by the way I did not leave Ryder's side for the first few months at all except to sleep). The parents next to us had only recently come into special care with their baby and this day Tony and I had overheard the doctors telling them that their baby boy was not going to make it and there was nothing they could do. I still recall the pain and sadness I saw in their eyes. They both burst into tears and it was then that my own heart was broken.
The cardiac surgeon sat down with Tony and I and discussed the procedure as to how they would put another hole in Ryder's heart. They were going to put a catheter into Ryder's groin and go up through his leg and into his heart. I remember having to sign all the paperwork that explained all the risks involved and it was really hard to know we were giving authority for the doctors to do this to our baby. We just had to have faith in the doctors and think positive that there was something that they could actually do to help him.
Mum and Ryder enjoying a cuddle at last
Ryders first surgery and coming home
The surgical parents waiting rooms are horrible, although on the outside they look clean with magazines and maybe a television, the parents inside them are going through an emotional nightmare. Time seems to stand still and alI you can do is hope and pray that when the doctors come back that they tell you good news.
Thankfully Ryder's first surgical procedure went well and we got to see him and hold his hand not long after. The cardiologist told us that Ryder would be scheduled in two days time for his next procedure, he sat down with us and explained what needed to be done. Ryder was to have a band put around his pulmonary artery, this was to slow the blood flow down and the band should last for around one year. The surgeon explained he would access Ryder's heart by cutting through his back under his left shoulder. He did not want to go through his chest in open heart as Ryder would require future open heart operations.
That night was the longest sleepless night. The operation morning came around again too quickly so we had to prepare ourselves for another surgery. When we got to the hospital they had moved Ryder out of ICU and into the close observations ward. We were tired and confused why they had moved him as we thought he would be getting prepared for the operation. The nurse staff would not give us any answers and said that we would have to wait until the cardiologist came to ask questions.
We waited and waited and waited, it was after lunch when we finally saw a doctor and all they could say was "Oh sorry, but Ryder is not having his surgery today". We were so upset and emotionally confused. We then found out that another child with more priority over Ryder had to be operated on instead, so we then obviously had to understand. We soon found out that hospitals are like roller coasters, one minute you are up and one minute you are down. You can never prepare yourself for the emotions that you are feeling.
Ryder's surgery was postponed another 4 days, but at least we got to hold him while we waited. The day finally arrived and we were back in the surgical waiting room pacing up and down the room for hours waiting to hear that Ryder was ok. It felt like an eternity but the surgeon finally came out and said the operation went well and we could see Ryder back in ICU.
Seeing Ryder after this surgery was really difficult, he had an oxygen tube, nasal prongs and tubes and drains coming out of his side. He was on morphine and seeing a two week old baby in this condition is just not right. Ryder's brother came in to visit and suprisingly he coped well but you could see concern written all over his little two year old face.
Throughout this whole ordeal Ryder was a trooper. He really was an angel. He coped so well with everything. Ryder would look up into my eyes and just let me know that he was alright. He hardly ever whinged and all the nurses fell in love with him. He was pretty hard to forget with the amazing red hair and dark blue eyes. We stayed a further few weeks in hospital until finally the day had come and we got to go home.
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Ryders next few years
When we arrived back home in Cairns it was with mixed emotions. Although glad to be home our whole perception on life had changed. We decided to sell the house and business and move to Victoria so that we could be close to family and the Royal Children's Hospital in Melbourne. We thought if we had to move down to a cold area then we had to be close to the beach, and we choose Torquay on the Great Ocean Road. Check out the hub called Torquay, Great Ocean Road AUSTRALIA.
Everything went well and to plan, except the lady who bought our business in Cairns never paid us the balance. She took advantage of our situation, but that is a whole other story and just added more unwanted stress to our lives.
Torquay is a beautiful place Ryder was going well and a happy little boy. We had quarterly check ups with our new Cardiologist in Melbourne, he was fantastic and very knowledgable. We were so glad to have brought Ryder to the Children's Hospital as it is renowed as one of the best hospitals in the world for heart kids. We had been told in Brisbane that Ryder would need his next open heart when he was about 6 months old but Melbourne were happy to wait until after he was a year older and bigger and stronger.
The next twelve months was fantastic, each day with Ryder was a blessing. Everywhere Ryder went he made people smile, he even became a child model for TARGET baby clothing. He really was a special baby that warmed the hearts of everyone he came into contact with. As a parent of a heart child there is not one minute of the day that you cannot forget about your child's ordeal. When strangers would come up and say hi to Ryder I found it really hard not to tell them all about him as he had been through more than some people had in their whole lives.
The days were approaching faster and Ryder's major open heart operation was getting closer. We had an appointment with our cardiologist and surgeon and they explained the surgery and had given us a date. The operation Ryder was to have is called a Bi-directional Glenn procedure and is used to prepare the heart for the future Fontan Procedure.
It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The surgery reduces the amount of oxygen-rich blood circulating throughout the body. These infants often show signs such as a bluish tint (cyanosis) to the skin, lips, fingernails and other parts of the body. Although a successful procedure will improve immediate signs and symptoms of the underlying heart defect, the procedure does not correct the heart defect. Other surgeries are usually necessary in the future to repair the defect itself.
Now, Ryder's venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart.
The operation was a huge success, although very scary, and extremely emotional at times but we all came through it really well. Each day was exhausting and trialling. We spent nearly every minute by Ryder's side and slept at Ronald McDonald House. The only thing that got me through each day was prayer. We had so many people and churches praying for Ryder and our family and I knew that God could hear us. Ryder is truly one remarkable little boy, he was in and out of hospital within 8 days of having major open heart surgery.
I must say that the Royal Children's hospital staff and facilities are world class and we are forever thankful to them and Ronald McDonald House.
Ryder being his cheeky self
Ryder from 2 years to 4 1/2 years old
Ryder was like any boy, other than the scars on his body and the trauma that he had been through. He ran around like every other child and from the outside no-one would have ever known that he is a heart child. The only medication that he is on is daily asprin that assists in keeping his blood thin. The only recognisable signs were that for his age he was very small, he was on the bottom of the chart for his height. He also had a blueish tinge colour which was mostly noticeable on his finger and toe nails. He ran around with all the other kids but would get puffed easily if he got too much exercise. He always knew when to stop and catch his breath.
Ryder went into daycare a few days a week while I worked on our holiday rental business. The only concerns at daycare was that if he got sick I had to take him immediately to the doctor and put him on antibiotics.
Ryder didn't have a very good appetite apart from chocolate which he was obsessed by. He was a very happy go lucky boy that loved to dance and make people laugh. I often say that I think he will end up becoming a stand up comedian, he loves to get up in front of people if we are out and either start dancing on the stage or doing something silly so that people recognise him.
As the year went on and Ryder was well we decided that we were fed up with the Victorian weather and wanted to move back to sunny Queensland, so we moved to the Gold Coast. I phoned our cardiologist and he sent a referral to the cardiologist in Brisbane to follow up Ryder. We had always been told that Ryder's next operation wouldn't be until he got to 4 or 5, just before he started school.
We made an appointment with the cardiologist who happened to be the same one as we originally had from Cairns. He told us that he thought Ryder may need the operation sooner than we had been told. We were a bit bothered by this and decided that we would go with our instincts and only book him in when we thought the time was best for Ryder and our family.
We were due to have another appointment in three months time, at this appointment the cardiologist again said Ryder would need his Fontan procedure sooner than later. This really stressed me out as I had always hoped it would be just before Ryder turned five. I decided that I wanted a second opinion and phoned my old cardiologist in Melbourne, he could tell that I was clearly upset and told me to bring Ryder down to Melbourne and he would see him. I have learnt over the years to really go with my gut and if I can recommend anything then this would be one of my main recommendations.
I was glad to see the friendly smile of my cardiologist in Melbourne, he gave Ryder an Echo and ECG and we sat down and had a chat. After discussing Ryder we came to the conclusion that Ryder could wait as originally planned so that was a huge relief.
Tip: Please if you are not completely happy with your doctors advice then it does not hurt to get a second opinion.
Even though we had good news that Ryder could wait a year until his operation it did not stop the constant worry and fact that we always had it in the back or our minds. It was hard to plan anything in the future because we just did not know how Ryder would be.
Ryder after recent Fontan procedure
Ryder's recent Fontan procedure
It was November and we were scheduled for Ryder's operation for the February, his last appointment showed a decline in his oxygen saturations and he was becoming a bit more blueish. Other than that he was absolutely normal.
Tony and I were now at the point that we just wanted to get his operation over and done with. The waiting was much harder to deal with now that Ryder was 4 1/2. The hospital told us that they could fit us in before Christmas so we decided that we were all ready and thought it would be nice to start the new year fresh. If you have ever had an operation then you would know that often you are all ready to go into surgery and then at the last minute the medical staff come and tell you that the have to postpone, often it is due to a emergency procedure.
This happened to Ryder three times, his second time they had even given him the pre med so they were just about to wheel him through the doors. As you can imagine this really can take its toll on your emotions, physical well being and mental state. We just had to stay positive for Ryder and have faith in God that he would choose the right time for Ryders operation. The best part for Ryder was that he got to celebrate Christmas about three times and we all actually got to spend Christmas at home as a family and not be in hospital.
The operation finally went ahead on January 19th, 2011. We had to be at pre-admission by 6:15am, we stayed at Ronald McDonald House which was across the road but as you can imagine we did not get any sleep the night before. I gave Ryder a big kiss, told him that I loved him more than anything in the world and waved goodbye as Tony took him through the double doors into theatre. My eyes filled with tears and my heart ached.
Previously I have always been the one to be by Ryders side but this time I just could not bear the thought of Ryder looking into my eyes with fear and knowing there was nothing I could do to help him. Tony came out shortly after and was clearly in an emotional state. Now all we had to do was wait. We were both exhausted and decided to go back to our room and try to get some rest.
Five hours had passed and Tony's mobile finally rang, it was our surgeon ringing to let us know that the procedure was finished and that Ryder coped very well and everything went to plan. Whew! That was the biggest relief. We rushed over to the hospital as fast as we could and waited outside ICU until they called us in.
All I remember is looking at Ryder for the first time and thinking Oh my goodness,- I thought that I had prepared myself mentally however, I really didn't expect Ryder to look like that. You just want it to be all over and by looking at him you know that there is now a long road of recovery ahead.
Ryder in ICU after Fontan procedure
Ryder after Fontan Procedure
The staff at the Mater hospital in Brisbane were great. I feel like we owe Ryder's life to the cardiac surgeon Dr Graham Nunn. What an amazing man he is.
Ryder was coping very well in recovery and was soon able to get his main chest drains taken out and go back on the ward. He had daily physiotherapist appointments where they would make him get out of bed and try and walk around. He didn't seem to be improving as well as he should so they sent him off for some Xrays.
It was not the news we wanted to hear. Ryder had heaps of fluid on his right side and he had to be taken back into ICU to get a drain put into his side and into the chest to drain the fluid. It was amazing within the first 24hours he had drained over 500ml of liquid out of his body. this was really stressing us out but the surgeon assured us that unfortunately it was quiet common for kids that had undergone a Fontan procedure.
The drain stayed in for a few days to continue to drain. One of the nurses just happened to say that it could sometimes take months for the drain to stop. This is when it all started to get too much for me and I really didn't know how much more I could take. I just knew though that I had to stay strong for Ryder.
The drain was causing Ryder a whole lot of pain and he was having to take constant pain relief. The next morning the drain had stopped and we thought that our prayers had been answered. Ryder went off for another Xray and the results showed that there was still a bit of fluid. The surgeon could see that Tony and I were at the end of our tether and made a suggestion that made us very happy. We had been in hospital for just over a month so he said that we could go home for about four days and see how Ryder coped and if the fluid would stop.
We took Ryder home. It was fantastic. He was so happy we had Tony's parents over from England and we all got to spend some lovely time together out of the hospital.
Day 2 at home had come around and Ryder was not looking well, he was really finding it difficult to breath and very lethargic. I rushed him to the nearest medical centre where they checked him over and advised us to take him straight back into hospital.
Off we went back to the Mater in Brisbane, Ryder's Xray showed his chest was full of fluid and he would need another drain to be put in. Another general anaesetic and the pain of the drain back in his side, how was he going to cope?
Ryder came out of theatre very drugged and uncomfortable once again.
A few days passed and Ryder was getting around carrying his drain box everywhere he went. He called it his hand bag. Throughout this whole ordeal Ryder always kept his great sense of humour even at the age of four and half. We spent another week in hospital and finally Ryder looked well enough to go home again.
He was sent home on lots of medication, one being Warfarin which was to keep his blood thin. I really didnt like the idea of this as it contained the chemicals they use in rat poison, but what choice did I have? The surgeon also put him on Lisinopril and told us that he would need to be on this for the rest of his life.
The most annoying thing was that no-one had ever told us that Ryder may need these medications after his surgery. I always have to look at the bright side and be positive and grateful that Ryder is here with us and now on the road to a happy and healthy life.
During the three months of Ryder's operation and recovery Tony and I had to leave our employment as we wanted to be able to spend 100% of our time on Ryder and our family. Although this has caused financial hardship we wouldnt have had it any other way.
Tony or I took shifts and one of us always slept in hospital with Ryder. We were able to offer each other support and a break when we needed it. The other would stay at home with our elder son Saxon. I am not sure how other families that do not have a support network cope.
Although our family and friends came in to visit, they did not live close by so Tony and I were really the only ones that could be in the hospital 24/7.
If you have a close family then this is the time you will need them the most.
Ryder carrying his drain 'Handbag' still managing to smile
And life goes on
Back to normality :)
Every day is a blessing, I wake up each morning and I am so grateful that Ryder is now happy and healthy.
Ryder has recently started school and apart from the scars you would not notice that he only functions on half a heart and has endured so much in his tiny little life.
Ryder is so full of fun, quite cheeky and everybody who meets him falls for him :)
During Ryder's operations I would often get so many messages from friends saying that they were praying for our family and it really made a difference knowing that people were thinking of us.
Thanks for reading about Ryder's story, I hope that it gave you insight into the life of a family dealing with a child with Congenital heart defects and the trials and tribulations that go with it.
If you have recently found out that you or a friend has a child with Congenital Heart Defects, then please contact the Heart Kids foundation. They are a great support!
Be positive, stay strong and have faith.
Love with all of my heart,
Heart Kids Mum