At her 20 week scan, Rachael discovered her baby had a congenital heart defect, hyperplastic left ventricle. Here she gives a very moving account of Henry’s journey – from pregnancy to surgeries and recovery.
It’s taken me a long time to come to terms with just what we as a family have been through. There have been dark, scary days, but looking back there have also been sunshine days – days that have had me bowled over with pride.
I want to share Henry’s story to help anyone else who is on this journey, to let you know that it’s ok not to feel OK. You will, as a heart parent, find strength you never knew that you had.
There are amazing charities and support staff out there to help you find a way through what can seem like a hazy path.
Our pregnancy started like any other – we were fortunate enough to fall pregnant straight away. Like any new expecting parents, we were excited – reading all the books, taking all the vitamins and monitoring what I ate. We thought we were prepared and we would be a normal happy family.
Our 12-week scan come quickly. I barely looked pregnant and we were excited to see our baby for the first time. The sonographer showed us his arms, legs etc and told us everything looked normal and fine. We walked out on cloud nine, relieved and excited that we would, in six months time, welcome a healthy baby into the world.
Little did we know that, come our 20-week scan, our world would be flipped upside down.
The 20-week scan started like a normal day. We were both very naive about any form of complications a baby could have. Why would we have any
worries? Our families didn’t have issues or complications, no one in our circle of friends had experienced any problems.
We went in expecting to just to be told the pregnancy was normal and find out the gender of our child. Instead, our sonographer told us that our son had a congenital heart defect. He only had half a heart.
We were taken into a side room and given a load of information explaining what they thought was wrong with the baby. Both my husband and I walked out in tears. What was meant to be a happy day turned out to be one of the most emotional days of our life.
After hearing the news and not really processing it, I remember looking at my husband, Ian, in the car with a huge pile of paperwork, just feeling blank. What did this mean? Why couldn’t we Google the condition? Why could no one give us a straight answer? How would we tell people that our son was different? Even looking back on it now, I had no idea how to process all the emotions.
I felt lost and exhausted, and immensely guilty. Guilty that I had done
something, smelt something, and eaten something to affect how our son had
grown inside of me. It didn’t matter what anyone said to me, I couldn’t shake the feeling.
We had loads of messages from excited family to ask what sex the baby was
and all I could do was say, ‘There’s something wrong with his heart and that’s all we know.’
My little bubble of not knowing that any of this existed had popped and we were facing the start of a very bumpy road to find our feet again.
What people can’t tell you is how your journey will go and what you will experience. Parenthood is a rocky road at the best of times and
we were about to find out just how much we needed to lean on each other to get through.
I went back to work the following day, after what felt like the longest night in history. We had to wait. Wait for a call, so a paediatric heart specialist could scan our baby and tell us exactly what the heart condition was.
I went to work and tried to put a brave face on. But, after staring at a blank screen and bursting into tears in front of clients, they decided I should take the day off to try and process all the emotions.
Driving home, a nurse phoned to ask if we were free tomorrow to see the specialist.
We sat in the waiting room for hours, both staring into space. I remember just looking around the room at expectant mothers and thinking, ‘Is our baby the only one? How can you all look excited? this is no timeto be excited.’
The doctor called us into her room and ran through the details she had been sent. I just looked at her blankly. Surely, by some miracle, the sonographer was wrong, the scan was wrong and our baby was fine. I willed this to be the case but sadly I was wrong.
Ian took everything in; every detail, every technical word and medical word, while I just stared at the screen in tears. After what felt like a lifetime of waiting, the doctor confirmed that he was a baby with hyper plastic left ventricle, not hyperplastic left heart syndrome,as we had initially been told.
Our baby’s condition was not curable but it was treatable – there was a small light at the end of the tunnel.
We discussed all the options in great detail and were told the first year of his life would be the hardest. If we could get through it, there was hope.
We were advised to have an amniocentesis to if the baby had any other conditions. We never spoke of what we would do if the tests come back positive, but thankfully we never had to have that conversation.
The months to follow were full of endless scans and checks, to put a plan into place for his arrival.
Henry was born on the 14th January in Lincoln County Hospital, at a
whopping 8 pounds 8 ounces. He is our super hero and his strong and
stubborn determination is what we feel as parents has helped him overcome everything that has been thrown at him.
Once he was born, he was transferred to the Glenfield hospital where we spent a week having checks and observations to determine the plan for his surgeries.
We were sent home that Friday, to have a check in four weeks time and a possible surgery 12 weeks after that.
I tortured myself over not being able to breast feed; I had very naive
expectations on myself. I cried most days during the first month of Henry’s arrival, I felt like a failure that I couldn’t breastfed my baby.
One day, on the ward, a young woman came in and promptly placed what I felt like was a litre of freshly expressed milk on the end table. I stared in amazement at her achievement. Then I glazed across at my freshly pumped 5mls. I burst into tears because I couldonly produce such a tiny amount.
We are brought up to believe that we give birth and – bam – just like that weproduce milk, that it comes through thick and fast and the baby magically latches on. My reality was a child whose tiny body had to work extra hard to just stay alive, and could hardly drink 5mls every hour. In hindsight, my body knew that was all he needed, but nasty mother guilt had such a strong hold. Especially, being the control freak I am, everything was out of my control. I was merely a passenger who had to wait to be told what was the best action for Henry.
At our four week check-up, we were told Henry would be having surgery the next day. He was ready to have a PA band fitted. This would restrict the flow of blood to his lungs and stop his lungs filling with blood while his heart grew enough to have the second stage of his surgery.
The surgery was a success and we were home within the week. At home, Henry was struggling to feed and we were up all night with a screaming child. The local GP told us it was colic. We weren’t convinced, but being first time parents we never questioned the GP and went with his advice.
We discussed this at home and thought that, as we were soon having a post-op check-up, we would chat to the specialist about it then.
On the drive to Glenfield, Henry was very unsettled and screaming. When we arrived, he turned grey and sweaty. I was in bits, but my very calm husband just said, ‘Let’s get him up to the doctors and discuss it with
them.’
On arriving, we were very calmly rushed into the scan room and quietly and quickly walked to Ward 30. Henry needed emergency surgery to drain 85ml of fluid from around his heart. All I remember from this was sitting in shock and tears, not knowing what was wrong with our little man. My husband was signing emergency surgery forms and Henry was rushed off to surgery, for a pericardial infusion to keep him alive.
Once again, the liaison nurses and Ward 30 nurses were the most amazing support helping us with everything.
After that stay in Glenfield, we never left the house without a go bag andemergency supply of items to keep us going at the hospital, should any more unplanned trips occur. Sadly, they were frequent over the first 12 months of Henry’s life.
Easter arrived and Henry had had his first immunisations. We had friends staying and were trying to have a normal public holiday celebration. Henry was very restless, but we were determined to try and not be panicked parents. However, something was niggling at us.
Ian and I agreed that something wasn’t quite right and we took him up to the hospital. Ian went home that night and I stayed with Henry. Something still didn’t feel right. I kept asking the doctors to check him, but was told he just had a cold and to give him some more paracetamol.
At 5am, Henry’s stats dropped and the emergency team was called. His body was shutting down.
Henry had picked up a chest infection and had a reaction from his jabs. We were blue lighted down to Leicester Royal Infirmary and once again left
uncertain as to the outcome for Henry.
Ian and I spent a week at the Royal’s Intensive Care Unit; once again the Royal and Glenfield were frequently in touch liaising with the specialists to make sure that he was getting the right care for his condition. We have felt extremely fortunate that the link between the hospitals exists.
When Henry turned five months old, we were told he was ready for his second surgery. He had his Glenn operation and, once again, struggled getting rid of the additional fluid. His body recovered quickly, but produced a lot of fluid to achieve this. The nursing staff on Ward 30 and doctors were aware of this and accommodated it into his recovery plan.
After having his Glenn, Henry was a changed child; he no longer looked grey and sick, and finally has started to grow and put on weight. We could see the life and colour coming back to him.
We still have another surgery and lifelong medicines to come, but we remain positive with a huge network of support around us. Both Ian and I are forever grateful to our family and friends, but also to the staff at Glenfield – doctors, nurses, specialists – for their constant support.
All that happened, took its toll. Even now, walking into a hospital or even aheavily sterile/bleached house makes me slightly feel faint. But I developed my own coping strategies, and formed small support networks with other parents.
The amount of steps we took around the hospital was tens of thousands each day; I know there are 10657 ceiling tiles from the ward to
ICU. The strangest of things happen when you are so vulnerable. At the hospital, hours turn into days and weeks turn into months. You make
friends, some you won’t keep in touch with and some who you can
call/chat/Facebook message after.
We become the parents who knew. We knew where to put laundry, knew who to talk to, what the monitors meant, how to turn them onto silent so you didn’t panic all the time.
It might feel like some days the walls are caving in and you are being smothered, but there is laughter, hope and some amazing nurses who go out of their way to help you and your family get through a rough time.
We now look back at those first years in hospital as game changers for H. All his hospital life, he was told what to do – have this blood tested, cannula, be taken to surgery to be cut open. And I see that so many hospital children are headstrong, they are stubborn and, boy o boy, do they havefire in their bellies! But it’s this strength and drive that gets them through their recovery.
Henry completed his final surgery, the Fontan, and it did
not go without complications.
I still remember the day like it was yesterday. We had been cancelled at thelast minute for an emergency operation, which we totally understood because we had been that emergency family, the ones that needed the life saving survey. However, there was still a part of me that wanted my son to be the most important person for the day. We had this surgery hanging over us for the past three years and I wanted to be done with this chapter. But, there was a part of me that felt relief for another day we weren’t in PICU, another day we didn’t have to see H looking like he had been in a fight, with wires and cables everywhere.
There were so many nights that I cried, but the hospital was also a very
grounding place. There were parents going through much worse, with children who had a much harder fight ahead. I remember one night, just walking down the corridor and falling into Ian, despairing at the injustice of what was happening to these children, to our child; what had we done to deserve this?
I was so sick of well-meaning people telling me, ‘God only gives you what
you can handle.’ There were days when I couldn’t handle it, days where I
tortured myself thinking that I must’ve done something to deserve this. The
truth is we had done nothing, we are just 1 in 200000 that have drawn this
card.
Everyday, I would look around the ward and see super hero children
fighting bigger battles than they should be fighting. I made a promise that I
would never show Henry fear or worry, that around him I would be a rock.
Today Henry is to the most a happy and healthy boy! He does have speech
delays and sensory issues, but is supported by the most amazing team of
doctors and nurses, by understanding and supportive staff at his nursery and by our incredible tribe of friends and family.
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