Baby Adam - Half a Heart, Not Half a Life

Hello everyone,

We never thought we would be here sharing such a private and sensitive matter. However, we urgently need your support to help save our son’s life…

In September 2022, our son Adam was born premature with a very severe congenital heart condition called Hypoplastic Left Heart Syndrome (HLHS), in which the left side of his heart is underdeveloped. He was born with half a heart and left untreated would not have survived longer than 2 weeks.

HLHS is typically treated through 3 open-heart procedures; Norwood (first 2 weeks of baby’s life); Glen (4 to 6 months) and Fontan (2 to 4 years). However, as our son was born premature it was too risky for him to undergo the Norwood as he was below 3kgs, therefore required an intermediate open-heart surgery when he was 3 days old to give him more time to gain weight. Adam then spent the next 5 weeks fighting for his life in intensive care and by the will of Allah (God), when he was 5 weeks and 3 days was ready for his Norwood procedure. We were very fortunate to have a world leading HLHS expert, Dr Guido Michielon, successfully performed both open-heart surgeries to reconstruct Adam’s heart to give him a chance at life.

The journey has been extremely difficult with lots of highs and lows. We have yet to take our son home and we have spent the past 5 months living in hospital, providing Adam with all the love, support and prayers he needs as he battles to make it to his next milestone – the Glen procedure.

Unfortunately, our journey has been further complicated as our hospital is currently going through a merger and organisational restructure with another NHS Trust, which has resulted in our surgeon leaving and is now working at the Gaslini Institute in Italy. Our surgeon has kindly made himself available to return to perform our son’s Glen procedure at our UK hospital to allow continuity of care given our son’s unique anatomy, which makes his Glen procedure significantly more complex and high risk.

We have spent the past 3 months pleading with the new NHS Trust to allow a transition period and grant our surgeon an honorary contract to perform our son’s surgery, however they have refused without providing a clear justification as to why. The surgeon they have proposed has never dealt with a HLHS case as complex as Adam, nor has experience performing the surgical pathway our son requires. They have also stated there is a possibility they will not be able to operate on our son and put him under palliative care.

We have seen our son fight through his extremely high-risk Norwood surgery and overcome so many odds against him. The strength and resilience he’s shown at such a young age has been inspirational and he has recovered well from his initial surgeries. If it wasn’t for his scars you would never know that he endured such a traumatic journey. We have come too far as a family to give up now when we are so close to bringing our son Adam home.

Unfortunately, we have not been able to find any other surgeons in the UK of Dr Michielon’s calibre or experience to perform the highly complicated and high-risk surgery our beloved Adam needs. We are now in a difficult situation where our son is likely to require his next open-heart operation in the next 30 days. Our only hope is to travel to Italy for Dr Michielon to operate, as he has confirmed he will be able to perform the highly complex surgery our son needs. We have been in touch with Gaslini Institute and they have accepted Adam’s case. We believe this is the best option to maximise our son’s chance of a successful outcome and quality of life.

The complication we are now facing is the cost of air ambulance transfer to Italy, heart surgery treatment, hospital stay and living expenses, which is estimated to cost £65,000. Any contributions will go a long way in helping us save our son Adam. If you are unable to donate, we ask that you please keep our son Adam in your prayers.

Please know that any funds raised will be used solely for Adam’s medical treatments and expenses in Italy and any extra will be donated to The Brompton Fountain and Little Hearts Matter charities, who have been great support systems for us along our HLHS journey.

https://www.thebromptonfountain.org.uk/

https://www.lhm.org.uk/

Thank you so much for taking the time to read this and we thank you from the bottom of our hearts for your generosity, prayers and kind donations.

Thank you all so much! ❤️