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 someone else know that it’s ok not to feel OK with everything going on, and that you will as a heart parent find strength that 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 and like any new expecting parents we were excited, reading all the books, taking all the vitamins, monitoring what I ate. We thought we were prepared and we would be a “normal happy family”. Our 12-week scan came quickly I barely looked pregnant and we were excited to see our baby for the first time. The excitement of seeing our baby on the screen the sonographer showed us his arms, legs, told us everything looked normal and fine. We walked out on cloud nine, relieved and excited that we would in 6 months welcome into the world a healthy baby. Little did we know that come our 20-week abnormality scan our world would be flipped upside down.  The 20-week scan started like a normal day. We were both very naive regarding any form of complications that a baby could have and 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 find out that the pregnancy was a normal pregnancy and that we would find out the gender of our child. Our sonographer instead told us that our son would have a congenital heart condition and that 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 paper work and just feeling blank; what did this mean, why can't we Google the condition, why can no one give us a straight answer? How could we tell people that our son was different, even looking back on it know 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 effect how our son had grown inside of me. It didn't matter what anyone said to me I couldn't shake the feeling, or the thought that sat on my shoulders for months to come. 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. The answers went blank, 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 what you will experience, parent hood 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 were to wait; wait for a call so a paediatric Heart Specialist could scan our baby and tell us just what the heart condition was that he had. I went to work and tried to put a brave face on, after staring at a blank screen and trying to answer phone calls only to burst into tears to clients. It was decided I would take the day off to start to try and process all of the emotions. Driving home a nurse called Linda phoned asking us if we were free tomorrow as Frances Bullock had a spare space before she was due to go away and they wanted to get us in as soon as possible to make an action plan. We sat in the waiting room for hours waiting to see the specialist, both staring into space, I remember just looking around the room at expecting mothers thinking is our baby the only one? How can you all look excited, this is no time to be excited?  Frances called us into her room and ran through the details she has been sent, I felt like I just looked at her blankly. Surely by some miracle the sonographer the previous day was wrong, the scan was wrong, our baby is 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, I just stared at the screen in tears. After what felt like a lifetime of waiting Frances 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 was treatable; there was a small light at the end of the tunnel. We discussed all the options in great detail but were told there is hope but the first year of his life would be the hardest year of our life, if we could get through it there was hope. Nothing was certain but at that very day at 8:39pm there was a small chance of hope. The following weeks to come we were advised to have an amniocentesis to check that the baby didn't have any other conditions. We never spoke of what we would do if the tests come back saying something but thankfully we never had to have that conversation. The months to follow were 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 over come 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 and to determine that plan for his surgeries, we were sent home that Friday to have a check in 4 weeks and a possible surgery at 12 weeks.

I tortured myself over not being able to breast feed H, I had very naive expectations on myself. I cried most days the first month of Henry's arrival, I felt like a failure that I couldn't breastfeed my baby. I sat by his hospital incubator day on day, 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 as I could produce such a tiny amount. We are brought up to believe that we give birth and bam just like that we produce milk it's comes through thick and fast and just like that the baby magically latches on and off we go. My reality was I had a child who’s tiny body had to work extra hard to just stay alive and could hardly drink 5mls every hour, in hind sight my body knew that's all he needed but that nasty mother guilt has such a strong hold especially when being the control freak that I am, everything was out of my control I was merely a passenger who has to wait to be told what was the best action for H. At our 4 week check-up we were told Henry would be having surgery the next day, he was ready to have a PA band which would restrict the flow of blood to his lungs and stop his lungs filling with blood while his heart grew enough to have the 2nd stage of his surgery. The surgery was a success and we were home within the week, when we were 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 GPs and went with his advice. We discussed this at home and thought that as we were soon having a post-op check-up that we would chat to the specialist about it then.

On the drive to Glenfield, Henry was very unsettled and screaming and when we arrived at Glenfield 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 just discuss it with them. On arriving we were very calmly rushed into the scan room and quietly and quickly walked to the 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 and emergency supply of items to keep us going at the hospital should any more unplanned trips occur, sadly they have been frequent over the first 12 months of Henrys 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 and not great, we were determined to try and not to be panicked parents every second of our lives but something was niggling at us.  Ian and I agreed that something wasn’t quite right and we took him up to Rain Forest Ward in Lincoln Country to get a doctor to check him over, we were told that once again we were over reacting but that they would keep him in for monitoring due to the fact that both Ian and I kicked up a stink. 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 that he just had a cold and to give him some more paracetamol. At 5am that morning Henry’s stats dropped, and the emergency team was called as 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 Royals Intensive Care Unit; once again the Royal and Glenfield were in frequently 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 5 months old, we were told he was ready for his second surgery. He had his Glenn operation and once again Henry struggled getting rid of the additional fluid.

His body recovers quickly but produces a lot of fluid to achieve this, the nursing staff on Ward 30 and doctors were aware of this and accommodated this into his recovery plan, we spent 2 weeks in Glenfield. 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 for endless support but also to the staff at Glenfield, doctors, nurses, sergeants for their constant support.  All that had happened took it’s toll, even now walking into a hospital or even a heavily 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 happens through when you are so vulnerable and hours turn into days, weeks turn into months at the hospital, you make friends, some you won't keep in touch with after and some who you can call/chat/Facebook message after.

Looking back one mum stands out her little boy Ronnie was in hospital on Henry's third visit, we become the parents who knew, knew where to put laundry, knew who to talk to, what the monitors meant, how to turn them onto silence so you didn't panic all the time. 

Tams become my milk fridge friend. I was a mum like Tam who struggled with producing milk and while a strange thing to bond over, without knowing it Tam really helped me to see that not everyone can produce bottles and bottles of expressed milk, and why should they when the situation is stressful enough without throwing all that in. So as each day went by, we would chat at the milk fridge, share our worries, frustrations and through it all laughter. Because actually it's not all that bad, it might feel like some days the walls are caving in and you are being smothered you can't breathe; but there is laughter, hope and some amazing nurses who will 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 has been told what he has to do, he must have this blood test, cannula, taken to surgery to be cut open. And I see it in so many hospital children they are head strong, they are stubborn and boy o boy do they have fire in there belly but it is this strength and drive that has gotten them through there recovery's. And I guess as parents our strength of not feeling like it's very small in comparison to H’s is the underlying strength that H has found to get him through

Henry completed his final surgery, the Fontan on November 2018, and it did not go without it complications 

I still remember the day like it was yesterday we had been cancelled at the last minute for an emergency op. Which we totally understood because we had been that emergency family the ones that needed the life saving survey but still there was a part of me that wanted my son to be the most important person for the day, we had had this surgery hanging over us for the past 3 years and I wanted to be down with this Chapter but there was a part of me that felt relief another day that we weren't in PICU another day that we didn't have to look at H looking like he had been in a fight and some sort of terminator alien 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 that 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 that “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's children fighting bigger battles than they should be fighting. I made a promise that I would never show H 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, of understanding and supportive staff at his nursery and of our network, our tribe of friends and family. 

Rachael x