My husband Tom and I excitedly went for the 20 week scan for our first baby. However the excitement was brought crashing down when the sonographer told us that she had seen our baby had a cleft lip, palette and heart problem so had arranged for us to see a consultant later that day. After many tests and an echocardiogram Orla was diagnosed as having Hypoplastic Left Heart Syndrome. At 33 weeks we met a cardiologist at the Evelina Children’s Hospital (where her care would be undertaken) and were told Orla’s survival rate was 67% until the age of 5. Unfortunately for us the pregnancy was not only tainted by Orla having HLHS, but also she was 5 weeks behind in growth.
At 35 weeks we went for another scan which showed reduced fluid so my husband Tom and I had to make a major decision; either leave her to grow and hope she didn’t die or to have an induction even though she was too small for even a hybrid procedure so ultimately had a tiny chance of survival. We broke down in tears as we realised we were basically being told our precious little girl was very likely to die, but we had to give her a chance of life! That night after an induction was deemed too risky Orla was born via an emergency caesarean weighing 3lb 4oz. From that day Orla showed her fighting spirit and determination to stay alive.
Finally after four week of sitting at Orla’s bedside she was big and well enough to have her hybrid. Leaving her was terrifying, but thankfully all went well and after 4hours she was in PICU. Seeing her for the first time all bloated from the fluid and with so many lines was difficult but Orla was a fighter and within four days she was well enough to go back to the neonatal unit, smiling at the shocked nurses, they couldn’t believe how well she had recovered. A week later on 18th July (her due date) we made our first steps towards home as she was transferred to St George’s. However another hurdle was put in our way when her scar disintegrated. Finally at 8 weeks old she was well enough to come home.
If I’m honest that was a day Tom and I thought we might not ever see. The first week of ‘being at home’ included two A&E visits due to dropping saturation levels, a few days stay and also a trip to see her cardiologists at the Evelina. Thankfully she got the all clear and we were able to begin enjoying life at home. At Orla’s routine MRI scan it was discovered her blood flow was putting too much pressure on her heart and so needed a further two visits to theatre for a catheterisation which turned into opening her chest again as she was too small for it to work. Despite all this Orla’s continued to fight and was allowed home again after a week.
On the 7th October we were back at the Evelina for her combined Norwood. We knew this surgery was more complicated and life threatening, but our hopes were high. Orla was a fighter and had come through so much already. Nonetheless the fear and dread was almost unbearable as we waited for her to go down and leave her once again in the surgeon’s hands.
Orla was in surgery for over 7 hours and after her surgeon Mr Austin came to talk to us. He explained they had encountered some problems and that her chances were 50/50, but this was an improvement as at one point she went down 30%. I was a mixture of feelings; relief she came back, scared her chances were not great and excited to finally get to see her again.
The moment I saw her however my heart sank, I knew it would take a miracle for her to fight her way out of this one. By 6am the next morning Orla’s condition has worsened so Mr Austin was called, and we were told had to prepare ourselves for the chance we might lose her.
As the doctors and nurses did all they could to save her (including opening her chest a further two times) we sat in tears, praying for a miracle until we heard what we knew was coming but also the last thing we wanted to hear “we are very sorry there is nothing more we can do, Orla is not going to survive”.
My heart broke!
Orla was placed in my arms and I cuddled my beautiful princess before finally passing her to Tom, I had carried her into the world and wanted him to carry her out. At 3.35pm on 9th October Orla’s poorly heart stopped beating as she lay in her daddy’s arms.
In the days that followed Tom and I had to begin to try and come to terms with losing the most precious person in our lives. On the 21st October, with the support and love of those closest to us we laid our beautiful angel to rest.
As time has gone on there has been many up’s and downs. Just after the New Year we were shocked to find out I was 9weeks pregnant. We had originally decided to wait at least a year before trying again and were worried there would be problems again so decided to keep it a secret until we knew the baby was healthy. I knew going through this pregnancy would be hard, but it was a lot harder than I ever imagined.
Being pregnant again darkened my mood as I struggled with feelings of loss for Orla, worried people would forget about her, and petrified I would not be able to bond with my new baby. I had also convinced myself there would be something wrong, even when we were told the baby was healthy.
During this time Tom was my rock and the person who got me through. On the 29th July, just over a year after giving birth to Orla, our second princess Shauna Catherine entered the world. Instantly I knew the fears of not bonding with her were nothing to worry about. She was perfect and looked just like her sister.
I know my story has a lot of sadness, but unfortunately that’s the reality of what might happen while on the journey of having a baby with HLHS. However, I hope my story shows although the pain will never go away, there is always a light to move towards.
Everyone deals with grief in a different way and some people may need to get more help than others but that’s ok. Hopefully my story shows that although nothing will take away the worries of future pregnancies it is possible to continue on to have another baby who is perfectly healthy.