When a child is born with Hypoplastic left heart syndrome parents are left with two choices. 1)To take their new born baby home for palliative care where they can survive anywhere between a few hours to a few days. 2) Go down the surgical route, where their baby will go through three open heart surgeries during different stages of the babies development. #hlhs #hypoplasticleftheartsyndrome #CHD #halfaheart
For those people who may have stumbled across my blog and have no idea what Hypoplastic left heart syndrome is, (hlhs, half a heart) let me tell you first of all that you are very lucky but also let me explain a little about the condition so you have a better understanding of hlhs.
Hypoplastic means under developed, and 'left heart' means the left side of the heart.........so put two and two together it simply means that babies born with this heart condition their left side of the heart has not developed.
There is no known cause for hlhs, I wish their was, then there would hopefully be a way to prevent it in the future.
Hlhs effects a number of structures on the left side of the heart.
The left ventricle is underdeveloped and too small.
The mitral valves is very small or not formed at all.
The aortic valve is very small or not formed.
The ascending portion of the aorta is too small or under developed.
They may also have atrial septal defect which is a hole between the left and right upper chambers of the heart.
There are three operations for Hypoplastic left heart syndrome. The time scale can vary from child to child.
Norwood - usually done within the first few days of birth.
Glen - around five months of age
Fontan - anywhere from the age of four
Now if learning that your unborn baby or new born has a heart condition is not scary enough for you and you have decided that you will go down the surgery route. Then there will come the time that you will have to hand your child over for surgery. I am not going to sugar coat this for you.......it scared the sheer hell out of me.....
I have an eighteen year old son (Lee) who has hlhs so I know first hand how this feels, Lee had his first operation at three days old at Birmingham children's hospital UK. I was twenty one at the time and I'll be honest I felt like I was in a complete daze, maybe it was lack of sleep from worry, Its the not knowing that's the worst part. I was shown around the pediatric intensive care unit (PICU) the day before Lees operation just so it wasn't so much of a shock to me when he was actually there.
PICU was indeed a wake up call for me, walking around seeing all these sick babies and young children really brought home just how serious all this is. I had never been inside a PICU before, I couldn't get away with how big the area was and how open, for some reason I thought it would be all rooms but this wasn't the case. I could stand at one end and see right across the room to the other side, all around the outside of the room were cots and beds, each one having curtains that can be pulled around each bed space. I would very soon realise why these curtains were important.
Till this day I will never forget the noise in there, now I'm not talking about the sound of people, it was all very quiet, it was the noises coming from the machines from all around the room. I still have flash backs of PICU when I hear a certain noise eg my sisters old washing machine would beep when it finished its cycle and would beeb exactly how one of the machines that was linked up to Lee to alert the nurse the medicine had finished. Crazy how eighteen years later it can take me back in a heart beat.
Later that day the hospital minister came to see me, he wanted to know if I wanted Lee christened before he had his operation the next day. This really got to me, this to me meant they didn't expect Lee to survive the surgery and they thought it would be nice to do it before hand. I nicely declined and told him that I will have him christened after he is home. I was not about to give up hope on my baby just yet if at all ever.
The operation day had arrived, I had met with the surgeon before hand where he explained to me that Lees chance of survival was 40% , he went on to explain what they would be doing during the operation but I'll be honest I could not really focus on a word he said after telling me this. With what he just said and the ministers visit my emotions were all over the place. I signed the consent form for them to do the operation, there was no going back now, there wasn't anywhere to go even if I wanted to. It was either death or hope......I will always choose hope.
Taking Lee down for the operation was extremely hard, he was only three days old. I wanted to get to know my son, I wanted him to grow up and live his life and for me to be the best mum I could possibly be, I needed this chance, he needed this chance of life.
Lee was wheeled down in his little cot with oxygen, we were taken into a room for me to say goodbye before he was taken into the operating room. I touched his tiny face, kissed him on the cheek and told him to come back to me. I turned to one of the surgical team and told him he must do everything he can to bring him back to me.
They took him through and I stood there alone with the only sound being my heart breaking.
Being a mum I can honestly say, handing over your child for open heart surgery it one of the worst feeling possible. To put your child's life in the hands of total strangers and hope that they will return him has to be something greater than faith.
That had to be without a doubt the longest six hours of my life, I never left the waiting room. A room full of people all sitting waiting for their loved ones, all together in this but at the very same time so utterly alone.
As you have guessed Lee sailed through the operation, I had never seen so many machines and wires in all my life all connected to Lee. He looked drowned in wires. You can prepare yourself mentally as much as you can but its so different when you actually see them in person.
While being on PICU I had nipped out to the toilet to come back in and find Lees curtains had been closed around his cot. His heart had stopped, they plugged in wires that were still connected to his heart and managed to bring him back.
A week later Lee was now up on the children's heart ward and doing great. It was around 9.30pm and I was sitting holding Lee and watching the television, he had not long finished a bottle. Lee was connected to a machine that measured the oxygen in his blood, (sats machine) normally this would sit at around the number eighty.
In the space of four seconds this number dropped to the number twelve, alarms were going off now in his room. His body went limp and he turned a very pale colour, It was at that moment that I thought I had lost him. Nurses came flying into his room and more alarms were going off, people were all shouting and next thing I knew they had taken Lee away.
Lost, scared, confused, panic and alone...... so many emotions all at the one time. One of the nurses came into say that Lee had been taken down for emergency surgery and it wasn't looking good, that I should call someone as they don't think he would make it.
Turns out he did....he had a blood clot pressing on his shunt they put in during the operation in his heart that was causing a narrowing, they said if the clot had blocked the shunt then he would definitely would not of survived.
This is Lee in PICU after his third operation.
Handing over Lee to the surgeons was so much harder this time around compared to the first two operations. Lee was now five years old, He was his own little person with a big personality, he was so funny....still is.
I tried my very hardest not to let him see I was upset, I did not want him to see that there was anything to worry about, thankfully he had been given premeds before we went down so he was acting like a drunk person and making everyone laugh. I gave him a kiss and cuddle and just prayed it wasn't for the last time. Again like the other two times I told them to please bring him back to me, at this point tears were rolling down my cheeks and my voice was cracking. I cannot express in words just how hard this was to do. To know that this might be the last moments you have with your child, I still get emotional as I type this.
You already know Lee was fine, but how differently my life would be now if it never turned out the way it did. During the times Lee was in hospital I witnessed a lot of babies and young children's deaths, I remember the look on parents faces as they left the room where their child has just died, I lost count of how many times the curtains were pulled around Lees cot or bed indicating a child has just passed away. I will always remember the look of that pram as the porter came to collect the babies when they passed away, I will remember the silence, the machine noise, the cry's and the waiting.
I will be forever grateful to the surgeons for saving my son, to the nurses who looked after him, to the cleaners for making everything clean and safe, to the canteen staff for making great food for me to keep my strength up, to my mum, dad and sister for all their support then and still now, but most of all I'd like to thank Lee.......he never gave up the fight even though the odds were against him, he never complained even though he was so weak he could hardly lift his head from the pillow. He made me grow up fast and realise that the world is not all fun and games, he taught me to appreciate what I have and to never take things for granted. He is the reason I am the person I am today and I will continue to spread the word of Hypoplastic left heart syndrome so the world will learn what its like to raise a child with this condition and see it through a mothers eyes.