Baby Joel, a year of miracles

Happy Birthday Joel. December is all about the build up for Christmas but this December has also marked a massive milestone for baby Joel. He has turned ONE!

There will be a few of you reading this who know Joel and his family and will understand the magnitude of this landmark birthday but for those who don't here is a little bit of his story so far. I feel honored to have been invited to be a part of it.

Joel has a beautiful big brother called Tom. Their mum Alex told me how Tom had wanted to be a big brother for such a long time but the journey to conceiving Joel wasn't a smooth one. When Joel was conceived the family was ecstatic and at 26 weeks Alex couldn't wait any longer to see his little face again so she booked a 4D scan. It became apparent at the scan that things weren't quite progressing as they should be and Alex was sent straight to the maternity ward to be checked by doctors. From that moment followed a series of scans and appointment's baffled consultants until a mass found on Joel's lung was diagnosed as CCAM lung. CCAM lung is extremely rare and most health professionals hadn't heard of or had any experience of it. Here is a link explaining a little more;

http://www.uhs.nhs.uk/OurServices/Childhealth/Neonatalsurgery/Conditionswetreat/CongenitalCysticAdenomatoidMalformationoftheLung.aspx

The news was broken that most babies with this type of cyst on their lungs don't make it after surgery but in Joel's case the cyst was so large it was causing his heart to fail. The only option to keep Joel alive was to drain the cyst using a shunt through Alex's tummy. The risk of preterm labour was also high and if this happened the prognosis was a poor one.

Against the odds Joel made it through two fetal surgeries and in November his mummy and daddy were given a date that they would finally get to meet him. Still things weren't to be straightforward as Joel needed to have the cyst drained again using a needle through his stomach. This was needed to ensure that when he was born and air hit his lungs they didn't expand so much that they squashed his oesophagus preventing the NICU team from resuscitating him.

Unfortunately the surgery wasn't possible as Joel had made himself comfortable in a position that made the procedure impossible. This meant that Joel's induction date had to be brought forward to prevent further risk to his life.

In the image below provided by Joel's mummy Alex you can see the cyst which is the black mass in the lung which needed to be removed when Joel was born.

As a parent to premature twins who required only minimal help following birth I can't even begin to understand the rollercoaster of highs and lows that Joel's family went through. The absolute joy at the prospect of meeting their little miracle and the complete incapacitating terror at the reality of what may happen should his delivery not go as they hoped.

Joel was born on the 1st December 2015. Despite being warned that they may not hear him cry when he was delivered Joel's Mummy and Daddy heard a brief cry before he was intubated. It took the team of doctors 11 minutes to get Joel breathing again as the cyst was squashing his oesophagus.

Here is Joel's first picture sent to me by his Mummy.

On the 4th of December after being in a critical but stable condition since birth Joel was operated on to remove the cyst which his parents were told was the biggest the surgeons had ever seen. Again his parents were dealt a massive blow when they were told there was more chance of Joel not surviving the surgery than surviving it. Again Joel beat the odds and put an end to the longest day of his parents lives as he made it through the surgery. What followed was two weeks of life support, high pressure oxygen for four weeks and being tube fed until the 14th January.

On the 18th of January Joel was discharged from hospital on oxygen and finally allowed home to be with his family who had waited so long and gone through so much to reach this point. Tom finally had his wish of a baby brother at home. Unfortunately they weren't able to relax for long as on the 21st of January Joel stopped breathing whilst on the school run for Tom. Joel was resuscitated by his mum who had learned what to do using the St Johns ambulance song only the day before. A song that saved his life. You can watch it here;

https://www.youtube.com/watch?v=Gc1kR8ZQxQ4

Numerous hospital visits followed (some by ambulance) but in June Joel was strong enough to no longer need to be on oxygen. At this point his big brother Tom said that he knows now that no matter what happens Joel will be ok as he is "the strongest baby in the world".

After meeting Tom and Joel at their photoshoot earlier this year I think I would be inclined to agree. Joel was sitting and desperate to stand. Luckily Tom was on hand to hold his hands and let him be up on his feet! Joel was super happy and content but determined not to give me any smiles. All his smiles were reserved for his big brother Tom.