Here are some of our members and visitors stories
Margie and Kian's story
Hi my name is Margareta Barrs and this is the story of how I found out about Kian's Hypoplastic Left Heart Syndrome (HLHS) and the first year of his life.
Pregnancy
At 20 weeks pregnant I found out I was expecting a baby boy, my daughter Mia chose the name Kian for him.
At 27 weeks and 2 days pregnant, I went to the toilet and found out I was bleeding - but didn't know where from. I went to the hospital to get checked out and got given an appointment for the 13th November 2007 to go for a scan to check on the baby boy that I was carrying.
I went for the scan only to be told that I needed to go back on the 19th November 2007 for another scan. I went to this second scan thinking there was nothing wrong and found out it was with the Consultant - Mr Young. I got told while there that he suspected a heart defect and got referred to Birminghams Womens hospital for a scan to see if Mr Youngs suspicions were correct.
On 27th November 2007,Lee, Mia, my mum, Lee's mum and I went to Birminghams Womens Hospital for a Fetal Cardiac scan. I had the scan which took around 50 minutes and was then taken to a room where we had to wait for 10 minutes (which seemed a lot longer) while they looked at the scan before coming into us.
Dr Paul Miller (Consultant Paediatric Cardiologist) and Veronica Donavon (Clinical Midwife Specialist) came in to speak to us and told us that my unborn son had got a Congenital Heart Defect called Hypoplastic Left Heart Syndrome (HLHS); which meant that the left side of his heart wouldn’t work when Kian was born and explained that he would need at least 3 open heart surgeries called the Norwood procedure when he was born - one at around a week old, lasting around 5-6 hours long with an 80% survival rate. He would then have another one at around 6 months of age and another at around 4,5 or 6 years of age. They also explained that these operations were called palliative which meant that they were meant to help the heart and not fix it altogether – the only way of doing that would be heart transplation.
They then told us that there were 3 options: the 3-stage Norwood surgery that they had just explained, comfort care which meant to do nothing and just let him die peacefully not long after he was born or a termination.
Lee said "why don’t we do comfort care" and I said I couldn’t do that and that I would rather give him the chance to fight with the 3-stage surgery – I couldn’t think of even contemplating the other 2 options.
We told them that we were going to give him a chance and go for the 3-stage surgery.
Here is and extract from my pregnancy diary dated December 3rd 2007:
Since I found out about Kians HLHS I’ve been thinking about what’s going to happen when he’s born, how long it will be before I see him, how I’m going to feel when I see him in an incubator, will he make it through the operations, how long will he live for and will he suffer in any way – today I’ve been thinking what I’ll feel when he has the 1st open heart operation and how I’m going to cope when he has it. I have got to be the strong one, the one who has to stay strong for Kian, Mia and Lee. I don’t think Lee has handled it well, he doesn’t talk to me and I feel that he has pushed it to the back of his mind hoping it will go away and that they got it wrong and Kian will be fine after all.
On 19th December 2007, Lee and I went for a scan with Mr Young (Consultant), he told me everything was good as it can be and spoke to us more about Kian's HLHS. We looked on internet so could understand what he had told us.
On 3rd January 2008, I went for a scan at Birminghams Womens Hospital with Lee, my mum and Lees mum. I had the scan at 11am – Kian weighed approximately 4lb 9ozs. Got told I can have Kian at local hospital and he would get transferred to Birminghams Childrens Hospital not long after he is born as he is having his operation there.
After going to the Birminghams Womens Hospital we went to Birminghams Childrens Hospital where a woman called Kay Dyer took us to see the ward that Kian would be on after his operation and also the Paediatric Intensive Care Unit where he would be after his operation, (I can remember thinking it was scary to see babies looking so helpless). She also gave us a folder with a few leaflets with information on HLHS and the operations.
Kian Born
Kian was born at University Hospital North Staffordshire on Tuesday 5th February 2008 (also Pancake Day) at 1.21pm after 51 minutes in labour, His length was 46cms and his weight was 6lbs 3ozs. He was put straight onto my stomach and Lee cut the cord, Lee and my mum were also able to have a little hold of him before he had to be taken away to have prostaglandin to keep the ductus arteriosus (DA) open before having the first operation. Mia didn’t like it when he was on the neonatal ward in an incubator as she wanted to lift the lid up because she said she couldn’t see him properly.
Kian went to Birminghams Childrens Hospital on 5th February 2008 at 11.50pm and got there for 1.15am on 6th February 2008, and he went down on to the Paediatric Intensive Care Unit at around 3.45am due to his oxygen levels.
I didn’t get to see Kian until around 7.30pm – I hated Kian being so far away and the fact I couldn’t be with him for over 9 hours. It was a shock when we first saw Kian as he had had a paralyzing drug that meant he was constantly asleep and on a ventilator to breathe for him. It was a shock as I thought he would be awake until he went for his 1st Norwood operation and not asleep all the time.
We got told by Mr Barron – the Cardiac Surgeon in charge of his operation that Kian would be going in first thing in the morning – at just 2 days of age.
On Thursday 7th February 2008 (also Chinese New Year) at 8.50am Kian went down for his 1st Norwood operation (the Japanese Norwood) and got back onto Paediatric Intensive Care Unit just after 1pm.
On 10th February 2008, 3 days after the Norwood, Kian had the skin on his chest closed but not his chest as they wanted to leave him another 24 hours to let fluid and swelling go down a bit more. At 11.15pm me and Lee got asked if we could sign a consent form to change one of the lines from Kians right groin to his left groin as calcium had leaked into his groin from one of the wires so he now had a Calcium burn to his right groin.
On 11th February 2008 Kian had his chest closed. Kian also had his first feed through a feeding tube.
The 12th February 2008 is the first time I see Kian awake again from the day that he was born – 11 days earlier as he was taken off the paralyzing drug and also the ventilator got turned down to the lowest setting – where Kian did all the breathing and the ventilator just helps but doesn’t actually do any of the breathing.
On 14th February 2008 (also Valentines Day and Heart Day) Kian came off the Ventilator and in to a head-box and did better in the head-box. Kian also got diagnosed with Necrotizing Entercolitis (NEC) so had to have his feeds stopped and be given antibiotics and TPN (total parental nutrition) instead.
On 15th February 2008 at 1pm Kian came out of the head-box and moved on to the High Dependency Ward. Got told that Kian had to be on the TPN for another 8 days.
On 17th February 2008 Kian got moved off High Dependency onto a normal ward.
Around 27th February 2008 Kian got transferred to the local hospital – University Hospital North Staffordshire.
Kian Started to breastfeed on the 1st March 2008 and got discharged to home on 3rd March 2008.
Medicines sent home on were: Furosemide, Amiloride, Aspirin, Folic Acid and Sytron.
Kian went to Birminghams Childrens Hospital on 14th May 2008 and had a Cardiac Catheter with balloon dilation of the aorta on the 15th May 2008. He had to stay in due to low sats and eventually got discharged on 23rd May 2008.
Kian went to Birminghams Childrens Hospital on 7th July 2008 and on the 8th July 2008 he had the stage 2 part of the Norwood Procedure called the Glenn or Hemi-Fontan. Kian went for the operation (led by Mr Braun – Cardiac Surgeon)) at 8.30am and got back to the Paediatric Intensive Care Unit at 3pm, we got to see him at 3.55pm.
During the operation the cardiac team found that Kian has a Bilateral Superior Vena Cava (which means he has 2 SVCs) so they cut and tied the left one during the operation.
On 9th July 2008 Kian had an extra chest drain put in to drain fluid that wasn’t being drained by the one already put in during the operation. He also kept on d-satting (low sats).
On 11th July 2008 Kian had a cardiac catheter done which found that above where they had cut and tied his left SVC there was an extra vein or collateral that needed plugging so while they did the cardiac catheter they did a Coil Occlusion or Coilization.
Kian was discharged to home on 19th July 2008. Medicines he was discharged with were: Captopril, Furosemide and Aspirin.
What has happened since first 2 operations?
Since the first 2 operations Kian has been in the local hospital – University Hospital North Staffordshire twice – the first time for a Chest Infection and the second for a Viral Infection.
He was last weighed on 2nd February 2009 and weighed 18lbs 13.5ozs.
He is now 1 year old.
David's Story
My Struggle
My wife and I tried for 10 years to have children with no luck. I was gone all the time due to my job driving cross country and it just wasn't in Gods plan yet. In July of 2003 my wife called me on the way to meet my tee time and asked me if I truly wanted to be a dad. Of course I thought she might be pregnant but she told me a lady she works with wanted to give her a baby. Her daughter was raped at the age of 12 and couldn't raise the child the way it needed to be raised. To make a long story short my daughter was born in Oct of 2003. We met her when she was just 2 hours old and fell in love with her right away. Everything was going great we took her home from the hospital and allowed visitation whenever we could. Our adoption was finalized on Dec 15 of 2003 and it was one of the best days of my life. 6 month to the day our adoption was finalized on July 15 of 2004 we received in the mail a summons by the state of Indiana that we were being sued for the annulment of the adoption. In other words the baby's mom wanted her back and we were going to have to fight for her. We were told from her attourney we didn't let them see the baby and because we didn't keep up with our part of the bargain they wanted her back. This made no sense to us because we were in communication with them and I have video of them at my house seeing the baby. On my daughters 1st birthday we found out that my wife was pregnant and we announced it at her birthday part to the family. We were still fighting for my daughter but our life was great because we were expecting a newborn. On May 24, 2005 my son was born it tied the happiest day of our lives because we now had to babies to take care of. The first day went on like it does with every newborn you show him off to everyone and recover from the stressful day of child birth. The 2nd day of my sons life started like the first. We were excited about being parents but by the afternoon things started changing. The nurse wouldn't bring our son to us because she noticed something with him and she wanted a doctor to take a look at him. She called a neonatologist who came in to check him out and he called a cardiologist to come in also because he didn't like what he saw. He called us into the nursery and showed us an echo of our sons heart. It was horrible news even more horrible than being sued. He explained to us that my son had one of the worst heart defects that a baby could have. He has HLHS or Hypoplastic Left Heart Syndrome or in lamens terms the left side of his heart didn't form and was either going to require a series of 3 open heart surgeries or he would die. I was in total shock and I couldn't even tell my mom where I was at when she asked me. It was horrible and if I had to describe the situation is was liked someone dropped a car on me from a 12 story building. I couldn't breathe to cry.
I was transported to Kosair Childrens Hospital that night and my wife had to stay at the hospital where she delivered because she had a C Section and couldn't walk. We got settled at Kosair in the NICU and everyone kept telling us the doctors where great and that they would take care of my son. My wife was finally released to come to the hospital just in time for her to learn that my son was dying. It was May 31st and his heart was failing. His heart had been racing between 150 and 240 beats per minute for a week and his heart was wearing out. They were probably going to have to do emergency surgery on him but they had to wait for the surgeon to get out of a heart transplant surgery. We sat at his bedside all day behind a white curtain with his cardiologist and the nurses. This was the worst day of my life. They put David on some medication to help his function and he started to turn around. He made it through the night and was scheduled June 1st for his Norwood procedure. This procedure reroutes the blood flow of his heart completely. He was in surgery for about 6 hours and then he was in recovery for an hour or 2. I was utterly exhaused from no sleep and the stress of everything. Remember we were still fighting for my daughter and now we were possbly going to loose our son.
That night was such a shock to me because of what I saw. That morning when he went in he looked like a baby but when he came out of surgery and was put in PICU he looked like something out of a horror film. I wish someone would have warned me about what I was about to see because when I went into the room he was lying on a table with a hole and I mean a hole in his chest. They couldn't close him up after surgery because of swelling so he had a gortex patch over his chest. with all kids of tubes coming out of him. He had 18 different pumps and monitors hooked to him with nurses and doctors coiming in and out of the room all night. Little David was in the hospital for a month before he got to come home. I remember crying to my mom when I told her we were coming home. I think everything just released from me at that time because I was trying to be so strong for my son and my family that I just couldn't hold it back anymore. I couldn't stop crying I cried until the tears quit coming which was about a hour.
On August 2 on my wedding anniversay we received a call from our attourneys (we had 2) that we had one our case but the other lawyer was going to file an appeal with the supreme court of Indiana. Our attourney basically we had won beause they usually wont overturn a judges decision in an adoption case. We were so relieved on one hand but was still nervous on the other. In Oct of 2005 the court of appeals threw the case out of court. We were so happy and upset all at the same time. It cost us $30,000 to keep a child that was rightfully ours to begin with and should never even been put through it.
My wife asked me why I didn't seem happy about the way things were going and I couldn't tell her why. I was a happy go lucky kind of guy and for some reason I couldn't smile anymore. I could make a smile with my face but it wasn't real. I wasn't happy with anything, my life, my wife, my work, my family, anything. It was depressed in a way but I don't really want to call it that. We still had 2 more surgeries to go through and I wasn't letting down my guard. In May of 2006 my son had his Glenn procedure - They connected his Pulmonary artery with his SVC and he also had a 2nd surgery to give him a pacemaker. His heart kept racing about 200 beats per minute so they had to give him medication. The medication kept bringing his heart rate to low so they had to give him a pacemaker to keep his heart rate at 100. He was in the hospital for another month. You can imagine the medical bills, medicine prescriptions, and doctor visits. We had spent with insurance over $2,000.000 on him and we still have one more surgery to go through. We went into the hospital again on July 5 to have a heart cath. They were trying to find a way to fix the irregular heart rhythum that he has and while they were flushing his lines, at least this is the only thing they can think of that could have made this happen, he had a stoke on the right side of his brain. He didn't know his mom or dad and just calling out Momma Momma Momma over and over and over. My wife was holding him but he didn't know who she was. He couldn't raise his left arm or his left side or even his left leg. We thought he might be paralyzed on that side of his body but time would tell. After a few worried hours he started moving the left side. He had tremors in his left arm but he didn't have much control over the left side of his body. He has had to learn how to walk, crawl, sit up, run, and everything else he was doing before the stroke. He is in rehab to help with strengthening and conditioning and has done very well. Davids Fontan was on August 19, 2008 and to me this was the hardest surgery. We were only in the hospital for 8 days but going home on chest tubes was horrible. The pain little David went through with them was almost unbearable for me. We also lost our home in July of this year. We tried to keep it but with our taxes increasing 71% and our ARM almost doubling and the cost of fuel there was just no way possible to keep it. We are now renting a new home but it isn't the same. I feel like a failure as a dad because I am supposed to be the one that takes care of his family. I work very hard to try to give my family what I need but it just isn't enough.
When I Realized I Needed to Rally!
My wife kept telling me that I had become so negative and I never smiled anymore. I was always unhappy and things needed to change. I think I just had so much built up in side of me that it was blocking me from doing so.
What Worked For Me
I have been wanting to do something to help out other people who were going through what we went through or were going to go through. I created a myspace page as a support group for others who needed support plus friends and family could see his pictures. I have been tallking to other families who have went through some of the things my wife and I went through. I also was looking for hope for my son. I kept searching to find an older child who had his defect. All I could find was 13 years of age and younger. One night I found Jeni Sorensen, She is a 22 year old HLHS survivor with a pacemaker and stroke survivor. She had just gotten married and was on her honeymoon. I was so excited I couldn't wait until my wife got home to tell her. I believe even though I am a born again Christian and there were so many prayers going out to my family and son I just needed to see hope. The hope of my son growing older and having a family of his own. The hope that he could play certain sports, ride bikes, rock climb,and do some of the things a normal child, teenager, and adult can do. I realized he wasn't helpless. Just since I started the support group my wife has commented to me several times that my smile has started to come back. It is amazing what hope can do for you along with a lot of prayer. God just had to open my eyes and show me what I needed.
The Progress I've made
I keep living everyday with hope that my son will live to be an old man and have children of his own. I also live everyday with the thought that I am the father to 2 of the most wonderful children on this earth and I am so blessed that God chose me to be their father. God will never give you more than you can handle and you just have to have hope. I keep hoping and praying everyday that I don't loose my smile again. If I did I would probably loose everything I worked so hard to have. My life, my family, and my God. I also finally realized my dream by starting nursing school this week. I am 40 years old and starting a new chapter in my life. I feel God has opened the doors for me so I plan on giving it a shot. Thank you Jesus for showing me the way to go. Without you I would have died years ago.
Jake's Story
Jake Paul Raspin was born on 14th August 2006, our 1st son, after 3 gorgeous daughters.
Jake was 8lbs 14ozs and was a healthy normal baby.
When Jake was 7 weeks old, we had to take him to the GP for his 6-8 week check-up, the routine appt every baby has. This is when everything changed. The GP said she thought she could hear something wrong with Jake's heart. We said "No, I'm sure he’s fine, listen again", which she did. Then she left the room to get the senior doctor. That’s when we just looked at each other. Then we looked at our gorgeous son who was smiling away in our arms and said to each other this has got to be a silly mistake.
The senior GP came in and listened to Jake's chest and straight away he said I'm afraid to say I can hear a very loud murmur said it sounded like a cat purring in Jake's chest. We need to get you referred to the hospital ASAP. We both left the surgery numb and got into the car in silence and we both fell to pieces.
The next two weeks seemed like an eternity as we waited for the appt with the paediatrician and cardiologist, we felt like we were in limbo not knowing what the future had in hold for our son and us as a family. We searched on the internet looking for some help any glimmer of hope that’s when I found Heart Line - a fantastic heart support forum. They helped me and my husband get know what was in store for us and Jake.
We were lucky to have good family support and we had amazing support from Jake's Godparents', Carol and Malc, they were always there for us they helped us get through the long months until Jake's surgery.
The girls school, Lincoln Gardens Primary, were also very supportive to myself my husband and especially our three girls. They were there for the girls when they needed to talk etc…
The day of the appt arrived and we were so nervous. Jake was to see the Cardiologist from Leeds General Infirmary and they were going to do a more complex heart scan to see if Jake did have a heart condition. After what seemed like a eternity and seeing Jake's heart on the monitor, the doctors asked us to sit down. The doctors asked us about Jake's weight gain and we said it had been slow they also asked how Jake was with feeding and we said he did tire easily and that he also sweated a lot they said these were classic signs of CHD.
They explained what they had found. Jake had a large ventricular septul defect and a patent ductus arterious. Both serious problems. I felt sick and my husband looked so scared I felt like grabbing Jake and running but I felt frozen to my chair. The doctors carried on talking but to be honest I couldn’t really take it all in. Luckily, the CLN (Cardiac Liaison Nurse) came to speak to us when we had left the room.
The CLN explained Jake would need open heart surgery but that they needed him to grow as much as possible first and she also said that he would need special formula milk to help jake put on weight as CHD children struggle to gain weight and because their hearts are working so hard they burn calories too fast. I was breastfeeding Jake and was gutted to have to stop but we knew we had to do the best for Jake.
Jake also had to take several medicines to help his heart and to help his breathing.
We left the hospital feeling like our world had crashed in; looking at Jake he looked so well just like any other baby, we were in bits, wondering what we were going to do, what we were going to tell Jake's three sisters’ and our families and friends.
From that moment, on everyday became a whirlpool of medicines hospital appts, weight checks, every cough, cold, or sneeze made us worry and panic just how would it affect Jake?
It wasn’t easy for the girls at the time Jessica was 8, Lucy was 6 and Katy was just 3. We explained that Jake had a poorly heart and that the doctors needed to make it better and that Jake would need a operation when he was a bit bigger. The hospital gave us some great children’s books to explain what was wrong with Jake.
Jessica understood more though being older and she asked me the one question I dreaded would Jake die?
We sat her down and just told her no one knew and that everyone was doing there best for Jake we just had to wait and pray. CHD affects the whole family you have to take every day as it comes because you just don’t know what the future holds.
By the time Jake was 6 months old we had been in and out of hospital more times that we can remember. A simple cold would end up with him being admitted to hospital and we spent 10 days in hospital when he had a stomach bug as it all put strain on his heart and made him lose weight. For every ounce he gained, he would lose two... we were given special powder to add calories to his food and would buy all the puddings and foods with high calories but it didn’t seem to be working so Jake had to have a nasal gastric tube fitted. A tube direct to his stomach so he could be fed as and when was needed and so we could feed him when he was asleep at night.
It was a huge strain on the family emotionally and financially. When Jake was admitted to Leeds Hospital, I was on my own with Jake as Steve(my husband) had to stay with our three girls. I missed my husband and girls so much and Jake missed his daddy and sisters.
The doctors realised Jake needed his surgery ASAP and they said we will get him the next available date for surgery then I panicked. Miles away from my husband and other children I was so scared and felt so alone. I rang my husband up and told him the news and he said "omg, we haven’t had jake christened". With all the chaos we hadn’t had the time to think about it, we found the nurse and asked her what we could do. She got the hospital chaplain to visit us in our room they arranged emergency baptism for the following evening, 1st of May.
We had a small service in our hospital room myself, my husband and jakes two godparents’ and two nurses off the ward who had been like a friend to me during our stay in hospital. It was a very emotional time, a sad but happy day.
The following day we got the news the operation day had been set for the 3rd of May...less than 48 hours after his christening. The next 24 hours seemed to pass in a blur. My husband left the girls with their nanna, packed a bag and came to the hospital to join me.
Jake's operation day arrived and we had been up all night with him we wanted to spend as much time as possible with him in case the worst happened. The surgeon came to talk to us and told us what they were going to do and also told us there was a chance Jake wouldn’t survive the operation!!!
After the surgeon left the room, I remember Steve running to the toilet to be sick. He had been a rock through it all but all the emotions had finally got to him. Jake went down to theatre at 8.30am, Steve carried Jake to theatre and the nurse held my hand. We arrived at the anaeseathic room and Steve just froze and broke down he didn’t want to hand Jake over to the doctors he was so scared and tears were running down his face... I took Jake from his arms and placed him gently on the table. Jake was laughing and smiling he had no idea what was about to happen. We both gave Jake a final kiss and watched as they sent him to sleep... Everything was out of our hands now all we could do was wait and pray that Jake would be a fighter.
The following hours were awful. Time seemed to stop, every minute seemed like a eternity... We were lucky Jake's Godparents' arrived at the hospital to support us through the worst day of our lives. We wandered through shops, drank endless cups of coffee. Jake's godparents' had to leave and we went back to the hospital to the ward to finish waiting. Finally after 5 and half hours, the ward sister came up to us and told us Jake had made it and was being transferred to the intensive care unit .
Those next few hours just seemed unreal seeing our son lying there covered in tubes and wires. It was so scary, you just feel helpless, thank god for the fabulous doctors and nurses.
The surgeon came around and explained about Jake's operation and said they had done the best repair they could and now it was time for Jake to show us he could fight... and that he did. He was amazing. He was off the ventilator after 6 hours and on the high dependency unit the next morning... then and only then did we know in our hearts that Jake was going to make it...
After 48 hours in HDU (high dependency unit) and three days on the standard cardiac ward, Jake was allowed home and for the first time since his diagnosis he was medication free. We felt like we had won the lottery. It was such a emotional day bringing him home, because, to be honest, me and my husband, Steve had both thought we might not ever be able to do this.
Jakes godparents’, Carol and Malcolm, came down to Leeds to collect us and to take us home. They were amazed to see the change in Jake, he looked pink and so well... no longer the blue-grey colour he used to be.
Since Jake's surgery 18 mths ago, Jake has continued to thrive. He now has chubby little cheeks and legs and a rosy red colour to his skin. He still has bad days though… he has asthma and food allergies and gets very tired very quickly and still tends to go blue when he’s poorly so is still under the hospital he also needs speech therapy but he is alive he fought like a true CHD warrior and amazed us all.
Our Jake is amazing and we will love him forever and we wouldn’t change a thing because Jake's journey through CHD has made us stronger as a family. We no longer take things for granted, we live every day to the full.