Amie and Robert’s story

Amie and Robert share their decision to continue with the pregnancy.

We had our first holiday in the sun as a family in August 2011; little did we know that whilst we went away a family of three, we were coming back as a soon to be family of four!

We were delighted and surprised to find out a few weeks later that we were to have our second baby, though I was very nervous that I would suffer from severe hyperemesis gravidarum again like I had when I was expecting William. Unfortunately I did and it wasn’t until Christmas time that I actually began to be able to keep food down and start to feel a little better. We spent a lovely Christmas in Ireland with my family and were excited to be going home as we had our 20 week scan looming and we were going to see our baby again.

The 3rd January 2012 arrived – the day of our scan and it never occurred to us that it wouldn’t be anything other than a happy, positive day. Looking back on it now I guess we should have known that something wasn’t quite ‘right’. The scan took a bit longer than we were expecting, the sonographer said she was finding it hard to see the final few parts she needed to see as baby was lying the wrong way, would I be able to go for a walk and see if baby would move. Off I went thinking that everything was fine and we would soon find out if we would be having a little girl or boy. I came back and she was very quiet and it was taking too long – finally she said that she was really sorry but something wasn’t quite right with our baby’s heart, the words that no parent ever wants to hear and what did it mean?

She turned the monitor towards us and showed us our baby’s heart. She explained that at this stage the heart should look like a hot cross bun – you should be able to see four parts all the same size, we could see that this wasn’t the case for our little girl, one side was small (two chambers) and pumping, however the left side was bigger and wasn’t making any movement. The consultant confirmed that we would have to be referred to the Leeds General Infirmary (LGI) for a more detailed fetal heart scan, they were sorry but couldn’t give us any more information, what the diagnosis was, how serious and what it all meant. To say our world fell apart that day would be an understatement, we had so many questions, thoughts, worries and fears. This wasn’t meant to happen – not now and not to us!

Trying to be ‘normal’ for the next few days was so hard, I would well up with tears at the drop of a hat, wonder what we were going to be told, what would happen, how could I change things, would our little girl be ok, was it something that I had done, could her heart be fixed – was this really happening?

Our appointment was confirmed, as Robert and I nervously waited outside our tummies churned. We were called in and with the sonographer were two other consultants who explained that they would take a detailed look at our little girl’s heart which would take a while and then they would explain everything to us. We watched, they talked, we couldn’t understand, we anxiously waited.

Finally they finished and we were taken to a quiet room where a cardiac liaison nurse joined us. The consultant explained that the left side of our baby’s heart was not functioning as it should. The aortic valve leaving the left side of our baby’s heart was not functioning as it should. The aortic valve leaving the left side was very narrow and wasn’t wide enough to let the blood which needed to leave the heart flow through it. The right side had continued to form correctly and did function well however the left side wasn’t very good and as our baby continued to grow the left side of her heart would only deteriorate but to what extent they could not tell yet. Our little girl was otherwise healthy and would continue to develop normally.

The initial diagnosis that day was Critical Aortic Stenosis. The consultant explained that our little girl’s chance of survival after birth wouldn’t be possible without major surgery within the first week of life followed by at least two more operations at several months and then years of age, and even then her survival chances were very slim. She further explained that our little girl would not be the same as other children and would be very limited in terms of her exercise tolerance, need life-long medication and that her life expectancy would be significantly reduced. We were given three options.

We were left alone for a few minutes to try and understand all this very scary and overwhelming medical information. We both felt so helpless and just plain broken-hearted. We confirmed that we would have our little girl so another appointment was made for another scan and we were given the details of Little Hearts Matter (LHM).

I contacted LHM to get a better understanding of what we were going to be dealing with. I spoke with Suzie who was so kind and helpful and invited us to attend the LHM Open Day that March. The day was a mix of emotions for us both but it was also a big turning point and gave us so much hope and positivity for the future – but most of all that our little girl could have a future when she was born. Seeing so many children with the same condition, how they were doing and living was amazing and inspiring. Don’t get me wrong we were still very daunted and scared and the future was full of unknowns.

In March the scan confirmed that our little girl’s heart had developed into Hypoplastic Left Heart Syndrome. We were told that some babies needed to be sent away to another centre for their surgery and this would probably be Birmingham or London.

Those next few months went by in a mist of emotions, both of us trying to be normal and strong for our little boy. Looking after him became our strength. Robert and I were worried about trying to explain to him what was going to happen when his little sister was born and he was also going to be starting school a few months after she was born. We got advice from LHM, consultants, play therapists and liaison nurses and true to what they all said he took it all in his stride.

Our beautiful daughter Éabha was born in May 2012. I got to cuddle her for a few minutes. She looked exactly like William to me, didn’t appear to be blue at all, her eyes were open – it was just amazing – I didn’t want to let her go. She was then passed to the resuscitation team who took her up to the Neonatal Intensive Care Unit (NICU).

We found out that Éabha would be transferred to the Evelina Children’s Hospital in London. Neither of us were able to travel with her but the team reassured us that they would take good care of her.

The next day we were able to get the train to London with my parents and William. Robert and I were allowed in to see Éabha, she was in the Paediatric Intensive Care Unit (PICU) with her own nurse and monitors all around her. It all looked very big and open, high tech, specialised, sterile and a completely different world to us but at the same time quiet and calm and the nurses and doctors were all so friendly, helpful and reassuring. Her surgery was booked in for the Monday morning. The day of her operation arrived, Robert and I were staying in the hospital so we were up early to be sure to be there when Professor Anderson came to see us. He went through everything with us, yes there were risks and they had to be explained to us but he was going to do his absolute best to help our little girl. Robert and I had no choice but to trust this tall gentle man with our much loved little girl. We said goodbye through lots of tears. The next few hours were a haze as we waited for the phone to ring. William was a good distraction for us, we took him to the London Aquarium. We arrived back at the hospital before Éabha was out of surgery but at last word came through that she had done really well, our brave little superstar had come through her first major open heart surgery – we were so delighted. She was still sedated, on a ventilator and hooked up to all sorts of machines and monitors but she was doing well and Professor Anderson was very pleased with how her surgery went.

When Robert and I finally saw our little star she was asleep, she looked so vulnerable we just wanted to scoop her up and give her a great big cuddle but we couldn’t. We would sit beside her and just look at her in amazement and think of what she had been through and count our blessings. She continued to remain stable and do very well and one week after her operation we were told that we would be transferred back to Leeds General Infirmary (LGI) for a couple of days observation to ensure that her medication was OK and that she continued to feed well before we could actually go home on 31st May.

Éabha would be under joint care between the Evelina and LGI which would mean attending LGI for outpatient appointments and check-ups and Evelina for any MRI tests and her next operation.

In October Éabha went in her for Hemi-Fontan and within a week we were back in LGI for observation overnight and then amazingly we were home.

Éabha will shortly be two years old. She is like any other two year old and certainly keeps us on our toes and has us all wrapped around her little finger. She still manages to give us the odd fright now and then. We know that Éabha has a different, and possibly difficult road ahead but with the family and friends that we have around us; the support available to us and not to mention the knowledge we now have of what Éabha can accomplish; we will continue to face whatever may lie ahead with all that we have.

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    Antenatal Support

    Many families first find Little Hearts Matter just after they have learnt that their unborn baby has half a working heart. The Little Hearts Matter team are here to help make any diagnosis and treatment information easier to understand and will always try to help new families cope with the emotional choices needed during pregnancy. Following a call to the support line you will be linked with a member of the antenatal support team.

    Suzie has been with the charity since its inception, working in the LHM office for over 20 years.. She used to be a Congenital Cardiac Specialist Nurse so will listen to all callers’ concerns and work to help them understand what their medical team have told them, especially following a new diagnosis or treatment plan. Although she is unable to give individual medical advice she will help a caller to draw up a list of questions for their own medical team. She also works to help families to access support for a child in school or apply for benefits and she works to give a general overview of life with a congenital heart condition and the support a child or family may need at any stage of their journey.

    For help with an antenatal diagnosis of half a working heart, call 0121 455 8982 ❤️
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