Watching Jimmy Kimmel announce to the world that he had become a father again, I saw the heartbreak in his eyes, I saw the fear, the overwhelming emotion. It wasn't just that he had become a father, but he had become a father to a heart baby. The tears welled in my eyes as he described what happened, it was like he was telling our story too. You are so happy that finally the baby you have been waiting for nine months to arrive is here you want to shout it from the rooftops. Then you are confronted with the fact your baby is ill, and could die. That they need surgery and will have a life-long condition that will need to be monitored. Suddenly, it feels surreal like it is not happening to you and your life is put on hold as your watch your baby fight for their life.
When I had my son back in 2014, I had never even considered there may be something wrong with my baby. I had a good pregnancy and was told again and again how strong Elijah's heartbeat was. The delivery was quick and in the beginning, all was well. But it wasn't, and it was life threateningly serious. Just like Billy, my son began to change colour, and have dusky episodes and was admitted to the Neo Natal Intensive Care Unit (NICU). He was later found to have a Congenital Heart Disease called Tetralogy of Fallot (TOF), which means there are four structural defects wrong with Elijah's heart stopping it from functioning properly. De-oxygenated blood would leak back due to a narrowing valve and cause the 'dusky episodes'. There was also a hole in Elijah's heart that would need to be repaired, this condition could lead to learning difficulties and other complications.
Suddenly, my fairytale start to motherhood was ripped away, as Elijah lay in an incubator hooked up to any and every tube going. On day three we suffered a further set back when he had a stroke, after having multiple seizures. Turns out he had a bleed on the brain, which was likely caused by the delivery. Guilt ate me up from the inside out, after all it was me that grew him, and delivered him, surely this was all my fault? I sunk into depression and punished myself in any way I could. Elijah fought back, and on day seven we were released home from NICU.
It wasn't just fearing that we were bringing a new baby home, it was the pure terror that we were bringing home a baby with a heart condition. He wasn't on medication, and until our surgery date came through he had no restrictions. This didn't stop me waking up multiple times in the night to check his colour or that he was breathing, or freaking out when he didn't drink a whole bottle, or if he was being fussy. I couldn't enjoy our time together as I knew he would need to have one of the biggest surgeries someone could have. I felt I couldn't enjoy the time in case I wasn't bringing him home again.
Once again, he fought and at six months old he had a full TOF repair done, which included the complete replacement of the narrowing valve that could not be saved. The hole in his heart was patched and he was brought up to the Cardiac Intensive Care Unit after five hours. Those five hours were the longest of my entire life. The minute I saw him again I felt a relief I had never felt before, and he looked well, his colour change was instant. After three days, he was moved onto a recovery ward and then two days later we were at home with Elijah who had now become a heart warrior.
That was two years ago now and Elijah has gone from strength to strength. From one TOF parent to another if there was anything I could say to Jimmy Kimmel it would be to allow yourself to have hope. It is only now I realise how much I tainted the first year of Elijah's life being petrified of what could happen. In a short time, Jimmy has raised so much CHD and TOF awareness, and this is only a positive thing. 1 in 100 babies are born with a form of CHD, and as you can see it doesn't discriminate over who it affects. Sometimes there are no warning signs until after birth.
It can at times feel I am constantly talking about CHD, but it is needed - so much more could be done. More awareness needs to be raised. So, Jimmy, don't stop what you are doing. Without realising by sharing Billy's story you are changing lives. The journey will probably not be a smooth one, but it will be worth it. Just like Billy, Elijah will likely need further surgeries in the future, but for now we are enjoying our time as family and enjoying him.
Jimmy Kimmel, I welcome you to the heart parent club.