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Aaron and Alpa's Story

"Our little heart warrior son, Aaron Dhruv Smith was born  in July 2015. He was born with a congenital heart disease (Hypoplastic Left Heart Syndrome, Two holes in the heart and a Coarctation of the Aorta) which required surgery when he was just 5 days old. Nearly 9 years down the line and 3 open heart surgeries later we have a thriving young man who is full of energy, love and love for life all thanks to the amazing Royal Brompton Hospital and the wonderful Brompton Fountain who enabled us to be close to our baby at a tough time and were there with support and care when we needed it the most!! 

When we first found out at 29 weeks pregnant that our baby had a heart condition our world came crashing down on us. How can an unborn baby have a heart condition? Why does OUR baby have it? What has caused this? What will happen now? were just some of the questions that were racing around in our minds. Uncertainty set in and we were lost as to what to do and what would happen This is when we were referred to the Royal Brompton and the anti-natal cardiology team Dr Vicky Jovett and Julietta took wonderful care of us explained everything and were at hand to answer any questions we had. With 6 weeks to go we along with other expecting parents were invited to the Anti-Natal classes run in partnership with the wonderful The Brompton Fountain. They discussed what to expect, shared success stories, showed us equipment which was available to express breast milk and other parents who have been through it were there to talk to. We were given a guided tour of the paediatric units at Brompton hospital which would become home for a while once our baby was born.  All this doesn't sound much but it gave us an insight on what to expect, put our minds at ease and answered a lot of the questions we had.

We were told that I would need to be induced so that they have a more controlled and safe delivery. We spent 3 days going to the hospital waiting to welcome our baby but there weren't any beds available at the Brompton. On 1st July 2015 we were told to go home and rest and to call the following morning to check if a bed was available... But this is not what the little one wanted in the wee hours on Thursday 2nd July 2015 I went into labour and our little man was born at 4:50pm at Queen Charlotte Hospital. He was then taken into the Neonatal unit of the hospital and that same night was transferred to Royal Brompton with his daddy. Aaron was admitted to PICU and everything was explained to Daddy (Brad) he was given a key to a room (provided by The Brompton Fountain) just 2 floors up and I joined them the following afternoon. We met the wonderfulcardiologist Dr Michael Rigby who explained to us what the plan was for Aaron and how he was doing.

Tuesday 7th July 2015 what was the longest day of our lives. Aaron had his first open heart surgery. We were in PICU early to give our baby boy surgical wash and cuddles before surgery. Everything was explained to us and at around 8:30am we went down to theatre and handed our little boy over to the anaesthetists and watched him slowly drift to sleep we kissed him goodbye and spent the next 13 hrs aimlessly passing time, wondering through the hospital and staring at blank walls. At 9pm we were told Aaron was back in PICU and the surgery was a success. The surgeon Mr Guido Michielon spoke to us and told us exactly what was done and that he was happy with his work. He told us the surgery was a success but the next 24 hrs were critical. Aaron was ventilatedand tubes and lines coming out from everywhere with and open chest. We were so scared to touch him that we may hurt him and cause damage but his bedside nurse was fantastic, she showed us what we can do, how we can care for him, reassured us and answered all our questions at the sametime as running around Aarons bed carrying out checks. The following morning we got a call that that Aaron has gad a cardiac arrest. We rushed down to PICU and once again the amazing Brompton team had worked their magic and saved our beautiful boys life. From this point it was upwards and onwards.

We spent a total of 1 and a 1/2 months living at the Brompton and cannot express how thankful we are to The Brompton Fountain for providing facilities which enabled us to be with our son and how amazing and fantastic all the staff are at the hospital. Subsequently Our little heart warrior had his second surgery in January 2016 which went fantastically well and 3rd and final surgery in January 2020 which also went fantastically well. Thanks to the amazing work of the Surgeons, Doctors, Consultants, Registrars, Junior Doctors and the exceptional care of the Nurses, Nursery Nurses, the Play team and The Brompton Fountain Aaron made full recovery and is going from strength to strength. The Brompton SAVED our sons life and The Brompton Fountain helped us as a family and we are truly thankful and forever indebted to them.

Having a child with a Congenital Heart Disease can at times be very overwhelming but rewarding too, you’re constantly on edge because you don’t know what the next day or the next minute will bring. Being in a situation like this has made us more grateful for every moment, every achievement and we celebrate the little things. As a parent you want your child to be part of everything their peers are able to do but you know they have their limitations, however they surprise you every time with their resilience and achieve so much even with their constant tiredness, breathless and sometimes pain. We are lucky to not have been in and out of hospital all the time and have taken the approach to let Aaron be involved and all activities even if he gets breathless, but it’s the experiences he gains which are invaluable and memorable. 

During our time at the Brompton we have made some good friends and met some amazing families and inspirational families whose strength and positivity is unbelievable. We find ourselves being part of an elite group and The Brompton Family which no one would have imagined or wanted to be in but are now proud to be part of. We are also thankful to all the messages, prayers and support we have received which saw us through a time which we never imagined we would go through"