Weʼre raising £500 to raise money for families of children with congential heart disease.
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Our story is a bit of long one before it‘s even fully begun but here it goes.... As most of you are already aware myself and Kieren announced we were having our second baby boy after attending an early gender scan at 16 weeks. After keeping it a secret for 4 months we couldnt wait to tell everyone we were going to become a family of 4.
On the 14th May 2018, we attended our 20 week scan with Reuben who couldnt wait to see his “baby minion” on the screen again. All the excitement got a bit much for him so he went outside with Daddy to play with his cars whilst the sonographer got all the measurements she needed. Baby J was being his usual self and didnt want to cooperate with being prodded so she couldnt get the measurements for his heart and decided to send me off for a walk. All seemed fine and healthy with the baby at this point. When it was time to go back into the scan, Reuben being a normal 2 year old was bored of waiting around in the hospital so stayed outside playing with Daddy. Again the sonographer carried on looking over baby’s heart and gathering her measurements... after what felt like years of silence another sonographer was called in to the room. Just like in the soaps you instantly know something is wrong with the baby. The two sonographers continued to look over baby’s heart and were talking amongst eachother - not having a clue what they were saying you still listen to the conversation hoping to grasp some sort of “English” with what they are saying.. that’s when I heard the word discrepancy with the heart. Kieren and Reuben were then called back into the room. We were told that the baby had a smaller aorta and they were unable to follow it to the normal aortic arch. In non medical terms it basically means that one of the main vessels in the heart was unable to pump blood around the heart fully. Obviously this would need to be diagnosed properly by a cardiologist in the fetal medicine department so we were given a date for a more in depth scan of the heart.
On the 22nd May 2018 we attended our scan with the cardiologist in the fetal medicine department of UHW Cardiff with my mum. Again baby J didn’t want to cooperate and was constantly kicking the doppler off him and moving away from being prodded. The scan was supposed to last around 35 minutes, after being in the room for around about that time with still no sign of the scan coming to an end, we sort of realised that what was found at the 20 week scan was going to be confirmed. We had no idea of what was yet to come and were sort of naive to how serious the condition actually was. Anyway when the cardiologist had recorded all his findings we were sat down and it was confirmed that the diagnosis of the 20 week scan was correct and the baby would need to be born in St Michael’s hospital in Bristol to go in to surgery within 7 days to operate on the Aorta (this problem was curable). However Dr Pateman was concerned with something else he had found with the scan, he had told us that the left side of the baby’s heart was considerably smaller than the right and if this didn’t grow within the next few weeks that the baby would have a second heart condition “Hypoplastic Left Heart Syndrome” which basically means smaller left side of the heart. Obviously I broke down with the thought of my newborn baby having to have major heart surgery. The subject of a termination was about to be brought up by the Dr but was immediately shut down by myself and Kieren. So we were sent home with loads of leaflets about both heart conditions and a date for a further scan in 2 weeks time to give the heart a chance to develop.
We prepared ourselves for the worst case scenario which was that the baby was going to have Hypoplastic Left Heart Syndrome. After reading up on both conditions we have now learned that babies with HLHS often have a smaller aortic arch, that the condition is more common in males and that it only occurs in 1 in 10,000 pregnancies - but after having one healthy baby boy and a history of no heart conditions at birth on both sides of the family, I still couldn’t understand how our baby could have these conditions. We were assured that it was nothing to do with us and there was nothing we did wrong, it was just unfortunately one of those things.
Which brings us to today - 8th June 2018. Our diagnosis. After another scan in the fetal medicine department it has been confirmed that our baby has got Hypoplastic Left Heart Syndrome and will need to be born in Bristol for his first open heart surgery. He will have an operation on his aortic arch and a stent put into the left side of his heart, he will then need a further 2 more operations on his heart over the first 5 years of his life - these operations won’t cure his condition, they will only temporarily fix it by allowing the right side to do all of the work. Later on in life he could eventually need a heart transplant.
I’m hoping to raise awareness for our son’s very rare heart condition by sharing our story and also raise some money for the following charities who over the next few months will remain close to our hearts.
- Little Hearts Matters
- Cots for Tots at St Michael’s Hospital Bristol (who provide accommodation for families with sick children)
- The British Heart Foundation.
There is also one major thing I hope to do by sharing our story and that is to at least change one person’s mind about donating vital organs.
Thank you for taking the time to read the first part of our journey. Here’s to our little baby J who hasn’t stopped wriggling about through out my post.
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Chelsea Manley started crowdfunding