Our Amazing Grace

Grace Elizabeth Lee from England

I enjoyed a normal pregnancy and delivery with Grace. She was born in the middle of May 2005 screaming and wide-eyed; weighing a healthy 7lbs 7oz!! Se was perfect and I could hardly believe it. My husband and I were overjoyed.

The day after Grace was born, I began to notice that she was breathing quite rapidly and that something generally didn’t seem right. When she was four days old, she was still panting, couldn’t feed properly and kept falling asleep when I tried to breastfeed her. After some persuasion, I finally managed to get a junior doctor to look at her. Within minutes of listening to her chest he went to get a paediatrician. The paediatrician said that there might be something wrong with Grace’s heart but reassured my husband and I that it was probably something minor like a hole in the heart.

At first, I was completely devastated by this news. It felt like the end of the world and I spent days just crying and worrying. However, the local doctors kept reassuring us that it was probably just a minor condition. Grace was 8 days old when we flew from the maternity ward to Alder Hey Children’s Hospital in Liverpool. Grace was to have a detailed echocardiogram. By this time I was anxious but feeling much stronger. Little did we know what lay in store for us.

The night before we went to Alder Hey, Grace seemed really poorly. She was not feeding well, was very sleepy, breathing extremely fast, jaundice and puffy. During our journey to Liverpool she grew worse. As soon as we reached the hospital, it was clear that she was in a really bad state. This is when we found out just how serious her condition was. The doctors performed an echo and then explained that Grace had several complications with her heart and would need surgery immediately, if she were to survive. The left side of Grace’s heart had no developed properly and she had a hole in her heart. This is a condition described as Hypoplastic Left Heart Syndrome Complex. I can’t begin to explain how I felt. It was like having your worst nightmare come to life – only this time I knew that I wouldn’t just wake up and that it was real.

I think I just went into complete denial. I remember the lovely cardiac liaison nurse, Mary, giving me information and books all of which I promptly handed back to her! I was devastated and in total shock. In the meantime, Grace was being prepared for theatre and we just had time to take some pictures of her first. The staff in PICU asked us then if we wanted to have her christened before they took her in but I said no. I was determined she would be christened at home. We clung onto those polaroid pictures of our precious princess.

That was truly the most horrendous day of my life. We had come to Liverpool expecting to be back at home with Grace later that same day. Instead, we had to cancel our flight and what we had thought was going to be a day trip to the hospital to confirm a minor condition, turned out to be completely the opposite.

Those six weeks at Alder Hey were a very difficult time for us. We waited for Grace to recover from her initial surgery (thorocotomy) whilst her cardiologist and surgeon planned her next stage of surgery. It was awful watching Grace struggling to breath, vomiting her feeds, struggling with countless medications, needing tube feeds, countless blood gas tests……..I just wanted to pick my baby up and take her home. She looked so poorly and so thin, I was heart broken. I don’t think we would have got through those weeks without the wonderful cardiac nursing staff on K2, the cardiac liason nurses, surgeons and doctors. Having somewhere to stay- Ronald MacDonald House was another lifeline for us. Also our wonderfully supportive parents- who looked after us!

At 4 weeks old and only 6lbs 2oz Grace underwent Open Heart Surgery. It was a long operation but it went very well!. I did however find it a huge shock that the surgeon had to leave her ‘chest open’ to allow swelling to reduce. However, that evening Grace became extremely poorly, at 8.45pm on the 21st June 2005 Grace suffered a cardiac arrest. We looked on as she was resuscitated in front of us. Watching your baby go through something like that is agonizing, in fact I cannot find any words to describe how horrific it was. That was the first time it really dawned on me that we could lose her. After a difficult time on PICU Grace improved, had her chest closed and was extubated…time for the ward-hurrah!! It was a slow process but she did it! I’m not a very patient person and some of the drugs they use in PICU have to be weaned painfully slowly! 10 Days after her cardiac arrest we took our Amazing little lady home for the first time- with no nasogastric feeding tube!!

Feeding were our main difficulties with Grace once we got her home and she needed to be ng tube fed once again. We were sad about this as it felt like a step back but we knew that most importantly to heal and get strong Grace needed nutrition. In August 2005 we returned to Alder Hey for a clinic appointment. She was kept in to have a cardiac catheter to balloon a re-narrowing in her aorta. This proved to be successful and Grace took it all in her stride! I’m not sure I did though!

Grace’s first winter was a tough one. We knew common coughs and cold could make her very sick. We continued to desperately struggle with her oral feeding.

In late 2005 we learnt that Grace would again need further Open Heart Surgery. I felt like my world had come crashing down all over again, we needed a break. In March 2006 Grace had further Open Heart Surgery at the Evelina Children’s Hospital in London. Although Grace was in hospital for about 6 weeks she did remarkably well and her operation was a success!

Ever since her last Open Heart Surgery, Grace has been in and out of hospital for various procedures and illnesses. Grace has also been treated for endocarditis three times, so over the years we have spent months on end in hospital with her. We continued to struggle with Grace’s feeding difficulties and in January 2007 we decided to allow her to have a gastrostomy tube fitted. It was a tough decision but definitely the right one, we all found the PEG tube so much easier than her ng tube. Due to Grace’s recurrent infections and illnesses she had a portacath inserted in Jan 2009, this has made life much easier for Grace when she is unwell.

Now we are in May 2010 and looking forward to Grace’s 5th Birthday!! She started school in Sept 2009 and absolutely loves it and is doing well! Grace is a wonderful big sister to her two year old brother Harry. Grace has a zest for life, she is very social, fun loving and knows her own mind! She loves everything pink and girlie! Grace loves singing, dancing, roleplay and wants to be a princess in Disneyland when she is older! In fact, if you ask Grace she already is a princess! A huge achievement was last weekend when Grace learnt to ride her bike without stabilizers!

Five years on we are enjoying a lot of ‘normal’ in our lives, something we could have only dreamed of when she lay in PICU as a new born baby. Yes, there are times when she cannot keep up with her friends, she gets tired and needs medications but aside from that she is a happy five year old and not all that different from her friends!

I never would have dreamed that we could have come this far - I’m just so glad and grateful that she is here. Thank you Lord for blessing us with such a wonderful little girl who has taught us so much about life and allowed us to meet such wonderful people along the way.

We know that Grace will continue to need ongoing treatment and that her heart can never really be fixed. That’s probably the most difficult thing to deal with – the fact that we can never really put closure on it because Grace will always need to keep going back into hospital. For now though, we’re just enjoying Grace being a normal five year old who is counting down the days to her Pirate and Princess birthday party!!

We continue to be eternally thankful to our local Children’s Ward, her paediatrician ‘Uncle’ William, our children’s hospice- Rebecca House and also Claire House Hospice on the Wirral. The amazing staff at Alder Hey Hospital and the Evelina Hospital, our family and friends.

Wrote by Kara Lee
May 2010

Klara Lee has kindly given CHD-UK permission to use the photographs on this page.