‘We think your baby has a heart problem’

Ella, my beautiful baby girl, was born at Bristol Maternity Hospital on 21 January 1993, 10 days late but everything went smoothly.  After the doctors had checked her over, we were transferred to the maternity ward for the evening.  I didn’t sleep a wink, I kept glancing over at my daughter who seemed to be sleeping peacefully but she barely moved, and didn’t want to feed.  I was worried but the nurses said it could be because of the drugs I had been given and is quite common.

 

The next morning, a paediatrician was doing the ward rounds. She picked Ella up and carried her over to the window saying she looked a bit dusky.  She put her back in her cot and said she was going to get someone else to take a look to double check there were no problems.  A cardiologist came very soon after and then my world came crashing down.  He said the words no parent wants to hear ‘we think your baby has a heart problem and we need to do some tests’.  They took my baby from me, no words can describe the utter pain and desolation.  I was unbelievably scared and desperate for them to come to me and say its all been a mistake, but it wasn’t, and they didn’t.  Instead they came and said they urgently had to operate to keep a hole in her heart open (all new-borns have this but it closes after 24 hours), so that oxygenated blood could flow through her heart, lungs and body.  They said she had Transposition of the Great Arteries (TGA) and would need open heart surgery within the next few days.  I made the worst phone call of my life to my husband who was at work, the receptionist answered the call and was very excited as she had heard about the birth and wanted to chat.  I just asked for my husband and she put me straight through, there must have been something in my voice which alarmed her.  My husband answered the phone and said ‘there’s something wrong isn’t there?”  I told him what was happening and he came straight to the hospital where we were sat down by the surgeon who was going to operate and told this is a very serious condition and Ella would not survive without the surgery.  My husband told him he didn’t want him to operate if it meant she would die later in life (I understand now what he meant – he didn’t want the pain of loving a child and then losing her).  The surgeon reassured us he could save Ella and drew diagrams of the heart condition Ella had. The operation was called a Switch. We both signed the consent form as my husband did not want to be solely responsible for saying yes to the operation.

 

Ella was operated on at 5 days old.  We were allowed to carry her to the operating theatre and we kissed her goodbye, neither of us daring to believe we would see our baby again.  My husband and I waited at home for what seemed like an eternity, in fact it was about 8 hours before I answered the phone call that told us Ella had come through but was very ill and we should go straight to the hospital.  We got there and were escorted to a baby therm in Ward 5 of the BRI.  My baby did not look like my baby, she was very swollen and had tubes coming from everywhere and I did not recognise her.  She had 24 hour nursing care and one of the nurses had been funded and trained by the British Heart Foundation.  She went through all the ups and downs that could occur and said we could visit any time but that Ella was extremely ill and it was touch and go. We were told to ask a nurse to show us to Ella when we visited as we needed to be prepared as to her condition.  It was the most awful few weeks of my life.  I didn’t want to be in the ward watching my baby suffer and I didn’t want to be at home wondering how she was.  I didn’t eat and I didn’t sleep.  I had hope and I had despair, she would be ok one minute and the next we would be asked to go straight to the hospital as she had taken a turn for the worse.  This went on for days and days and days.  I remember sitting outside the ward waiting for the nurses to finish their procedures when the lift doors opened and a family came in to the lobby.  They were there to visit their dad who had just had a bypass operation.  They came over to me with a parcel in their hand and said this is for you and your baby girl.  We have watched you sit by her side for hours and we are so desperately sorry for you but please don’t give up hope.  I opened the box they gave me and it was a Care Bear with a four leaf clover on its tummy.  I was unbelievably touched and to this day still have this bear.  I still remember this family who took the time to spread some kindness when they were going through such a hard time themselves.  Their kindness gave me the strength to go back to my baby.

 

Ella finally recovered enough to be taken to a less intensive care ward where I was shown how to tube feed her.  She gradually improved and we went back to the Children’s Hospital where they eventually took out her pacing wires and she began to feed properly.  The stress of everything meant I had no milk so she was bottle fed.  She went from strength to strength and we were finally allowed to take her home.  There were regular visits back to the cardiologists, weekly at first and then gradually getting less.  They checked her progress but we were told she probably would need further operations as her pulmonary artery was narrowing.  She had several closed heart procedures to try and prevent more open heart surgery but at 3 and a half I again carried her into the theatre for surgery.  Again, we sat and waited for a phone call.  Her surgery was successful but there were further issues which would need regular monitoring along with many closed heart procedures and hospital stays. Sadly, it was around this time that my marriage broke up, Ella’s Dad could not cope with her condition and the constant anxiety.

 

During Ella’s childhood, we had regular check-ups, scans, echoes, ECGs all of which were followed by a treat; maybe shopping and something nice to eat.  We made it an adventure and something not to be worried about but something which had to be done.  Of course, it was not an adventure for me, it was a time of great stress and an overriding wish for Ella to be declared healthy and no longer needing treatment. Quite often we would be given good news but quite often we were given bad news. It has been a long and lonely journey at times but my journey was not as hard as Ella’s.  She has been amazingly brave throughout.  School days were hard for her with other children saying ‘what’s that scar’ during PE and Ella not wanting to undress in front of them.  She wasn’t as fit as the other children and felt left out at times.   It was very hard for me to stand on the sidelines and watch this but I didn’t want to wrap her in cotton wool, I wanted her to have a normal life as possible. I tried to encourage her to do everything all the other children did even though I was petrified something might happen to her.  The cardiologists had assured me that she should do whatever she felt able to but there is always an underlying fear once your child has faced what Ella had faced that she would suffer in some way.

 

Following an MRI scan when Ella was 20 years old, our old fears became real again.  It was discovered that Ella’s coronary artery was completely blocked and had been since birth. Ella and I were sat down in the Cardiologists office and told the news that she would need open heart surgery once more and they would possibly need to harvest the veins in her legs.  I can still hear Ella screaming “No I won’t have this done”.  I grabbed her and held her as tightly as I could but there were no words of comfort I could offer.  We left the Heart Institute in a state of total shock.  Ella hardly said a word on the way home and I just wanted to cry my eyes out but I needed to be strong for her; so I saved the tears until later.  After Ella had calmed down and accepted that she needed this operation, we tried to live a normal life – it was her 21st birthday in the following January and we celebrated as usual with a big party and tried not to think of the looming operation.  The weeks and months beforehand were so very hard for Ella, she tried to come to terms with what she had to face but she would often ring me at work and say I can’t go on Mum and I would drive home to her just to hug her and be with her.   She often cried herself to sleep and her dreams were horribly vivid and scary.  This is when a Youth Worker would have been invaluable, someone other than her Mumma she could talk to, someone who could liaise with her workplace to give them some idea of what she was going through and someone she could ring who knew her and the heart team in Bristol, also someone who could connect with a 21 year old and all the issues a young person goes through.

 

Her operation took place on 6 April 2014.  The night before, her Dad and I sat with her eating pizza in her own private room at the Heart Institute.  Her Dad left and I crawled into bed with her and held her all night.  She was wheeled away in the morning and my heart once again was broken, how could this be happening to my beautiful, brave daughter.  She was in the operating theatre for much longer than expected by which time her Dad and I were exhausted with worry, we were sat waiting in the corridor of the hospital when they came to say there had been some difficulty but that she had pulled through once again.  The morning after the operation, I walked into her room and her first words were “I did it Mumma” and she did, my incredibly brave, amazing daughter had come through it all once again.  She didn’t stay long in intensive care, which was just as well as she hated it.  The ward was mixed and everyone in there was much older than Ella and this really upset her.  She was eventually moved to her own room where she felt happier.  Ella had a lot of ups and downs and one day she cried that she wanted to die. It is not a nice environment to be in when you are just 21.  Ella was watching older men in the corridor holding rolled up towels to their chests to try and prevent pain following heart surgery and it was very scary.   The nurses were brilliant though and often popped in to cheer her up and chat, it was through them and Ella’s strength that she overcame all the odds.  I was allowed to stay on a bed in the same room and gradually Ella improved.  We were once again released into the world.  I drove my car into the car park outside the Heart Institute on the day she was let out of hospital, Ella was waiting for me.  She got into the car, shut the door and I held on to her and I said ‘we’ve made it, I’m so proud of you”.  We both sobbed and held each other and couldn’t quite believe we had made it through again.

 

Ella gradually recovered at home but it soon became apparent that she was suffering from PTSD, her nightmares became very real to her and she found life quite difficult to cope with at times. After some counselling, she became much more able to cope although still found some situations difficult.  She was very lucky to have the help of close friends.

 

One of these friends mentioned a local charity called Youth@Heart she had recently worked with and Ella contacted them.  They were delighted to hear from her. They were seeking to raise funds for a Youth Worker to be based in the South West to help young people going through the same issues that Ella had faced.  Youth@Heart were fundraising for an initial £100k following the very sad death of Alice at 21 from TGA and further complications.   Alice had campaigned for a Youth Worker for young people with CHD (Congenital Heart Disease) as this is something she passionately believed in as does Ella.    Ella is now an ambassador for the Charity and we have both helped with fundraising for the Youth Worker post, this year the post was recruited to and it is hoped that many young people will be helped to cope with the many issues that CHD brings.  The one thing we know is that CHD can never be cured, only managed and anything that can be done to support these young people can only be a bonus.

 

Moving forward Ella is now in a relationship with Gareth. She has relocated to Wales and in May this year she gave birth to a healthy baby boy. The pregnancy was not without its problems but Ella battled through and I could not be more proud of hers. I am now a Nanna, something I never ever dreamed would be possible.  There is always hope even in the darkest of days.