Sophie's Story

The service, expertise, care, love, and determination of the staff at the Royal Brompton was amazing and gave our little boy the best chance possible.  We owe them a lot.  My father and I set up this charity for several reasons – so his death wasn’t in vain, to give back, to help others and to help prevent future unnecessary losses through learning and education.  I do not want what happened to and Joshua to happen to anyone else.

In our time at The Royal Brompton, I made incredible relationships with other families and have since had another little boy, Harrison, who sadly too has a heart condition.  This has given me great determination to ensure our charity makes a difference and helps develop services and awareness.

I found out we were expecting Joshua at 4 weeks.  It was a surprise but one we were overjoyed about.    I had a difficult start to my pregnancy, unfortunately, as I was admitted to hospital with a brain haemorrhage.  I pulled through with the strength of knowing of my unborn baby. ​

Later, at 20 weeks, we received devastating news that Joshua’s heart had not developed properly, that he had Hypoplastic Left Heart Syndrome.  The days following this news people felt the need to tell us their opinions – most being to terminate, not to put a baby through it, to ‘are you sure?’.  However, I was adamant, and we agreed we were going to continue with our pregnancy and were then followed up at St. George’s Hospital.  We were told I would give birth at Chelsea and Westminster and that Joshua would be transferred straight away to the Royal Brompton Hospital.​​

I knew I had made the right decision when we met with Joshua’s surgeon, Guido Michielon.  He was so pro-life and his whole life was about paediatric heart surgery.  He said he and the team were here for this very purpose – saving little babies lives, like Joshua. They do phenomenal work.​​

Two days before Christmas my waters broke and I started getting contractions, but we all thought they were just Braxton Hicks.  Luckily on Christmas Eve morning I had a midwifery appointment where it was confirmed I was in labour.​​

On Christmas morning at 11:34am our beautiful baby boy was born.  He was gorgeous.  We had a brief cuddle, and photo before they whisked Joshua away.  His daddy was able to go and spend the next few hours with him whilst they waited for transfer.  Joshua stopped breathing twice but a few hours later I was able to be wheeled down to see him before he was taken to the Royal Brompton Hospital with daddy.​

​On day 2 of his life, 27th December, he had his first stage of surgeries, his Norwood procedure.  This was always the most risky and harshest on the body.  Joshua did struggle with recovery, but he came through, he just did things in his own time, which we came to realise – you could never rush our little boy.  He spent his time as an inpatient in the Royal Brompton Hospital and we saw our little boy grow and develop, despite being restricted to lying on his back, in to a handsome, so incredibly smiley, and happy baby.  He, and us, as his parents, made true friends whilst there, in other families but also with the nurses and other staff, who have become life friends.  I love and cherish each so dearly.  Everyone’s highs became all of ours, as did the lows.  Our Brompton Family.​​

I was able to baptise Joshua on 10th April, and the staff fantastically helped me organise the ceremony at St Luke’s Church opposite the Royal Brompton Hospital and have a small party following, with a handful of family and friends.  I am forever grateful being able to have had this.  ​​

Joshua was an incredible size for a heart baby and was able to have his second stage earlier than normal, which was lucky as his body started to struggle.  On 20th April Joshua had stage 2, his Glenn.  We were astounded just how quickly Joshua recovered.  Days after having it he was back to his smiley little self.  ​​

We were finally able to take Joshua home on 5th May, a home we had recently purchased and waited to move into until we had our little boy with us.  It was the most incredible feeling and we had grins on our faces for days.  It was a pleasure and honour to have him with us.

​​Unfortunately, a few weeks later Joshua had a sudden deterioration at home.  He became unresponsive and blue.  We rushed him to our local A&E who spent the following 6hours stabilising him for the transfer to a specialised unit.  Unfortunately, The Royal Brompton Hospital had no beds, and he was transferred to The Evelina.  The Evelina is another exceptional specialised hospital.  There they received Joshua and monitored him but sadly a few hours later little Joshua had a cardiac arrest.  He was such a fighter that after 4minutes of CPR they got him back.  A few hours later, with correspondence with The Royal Brompton Hospital, all parties felt it was best for him to be there, where he was well known.  ​​

The Royal Brompton Hospital stabilised him and we saw great improvement.  Joshua was extubated on my birthday, and I couldn’t have asked for a better present.  He spent another further 2months in hospital.  We thought we had lost him on a couple of occasions during this stay from cardiac catheters to almost having cardiac arrests.  Joshua clearly wasn’t ready to leave us.​​

Joshua came home again on 29th July and my word what an incredible and amazing little boy he was becoming.  We got into a routine very quickly with him, with his meds, feed time and playtimes etc.  His development at home was exceptional.  He suddenly sat on his own, held his own bottle to feed himself, rolled, used his hands purposely, cuddled purposely, smiled the most amazing eye sparkling smiles, he talked a lot (noises), he played, he absolutely loved bath time, he loved reading with us (“Guess how much I love you”, being his chosen book the night he left us for good), he loved us singing to him, he loved music, bubbles, and his night lights.  He loved his food and generally just loved life.  ​

Joshua rarely cried, only if something was really, really, wrong.  He had such strength and bravery.   People often asked how I did it, watched my little boy go through so much.  I didn’t have a choice, it was my situation I found myself in, it was saving his life.  However, I managed to be strong from the strength I saw in my little boy.   The sheer determination, love and fight he had was so incredible.

Joshua had a smile that made any bad day or situation fade away.  He was just a loving and caring soul.  He showed concern for other babies when they cried in hospital.  He was also the nosiest baby, always looking around and watching.  He was so, so, so, so, loved by his mummy and daddy and family.  He was truly such a special little boy who touched the hearts of many.​​

Joshua fought a hard fight at every step of the way but with a smile and sparkle in his eye. He was so full of life, joy, happiness, and love.  He was full of character and such a cheeky little boy.  ​

​On 26th September Joshua had no fight left.  He was sadly taken to our local A&E where he deteriorated and had 3 cardiac arrests.  Local hospitals unfortunately do not have the expertise to deal with cardiac children and in fact appear scared to touch them.  There are limited CATs ambulance teams also, who provide specialist transport for cardiac patients from their local hospitals to a specialised unit.  Sadly, on this night all units were already on cases and only arrived when he had his final cardiac arrest.  I, his mummy, was able to kiss him before he arrested for the final time.  I then held my little boy for six hours, trying to process the events of the night and how my little boy now lay lifeless in my arms.​​

Joshua was such a beautiful, beautiful, boy who the world will now not have the privilege of seeing grow into a man.  He was an incredible boy, with such strength and an inspiration to all.  He was my world, my heart, and my everything.  He did us all so proud and I was honoured to be his mummy.  I was so lucky to have him in my life, even for the short time he was with me.   He changed my life and my heart aches for him every day.  I miss him so incredibly much and still cannot believe he is no longer here.​​

Joshua has grown his wings and heaven has gained an angel. It has broken my heart to lose him, but he didn’t go alone, he took my heart with him, and we will reunite in time.  ​

​Now I aim to bring something positive from his death, helping others and building his legacy.