our little man
A bit of a different one for you today.
I was umming and ahhing about posting about this, as it is a personal subject, but after going through something like this, I felt it to be quite cathartic to actually write it all down.
As some of you may know, I have an almost 2 year old little boy called Elijah. When I was 20 weeks pregnant with him, I had a routine scan, where they discovered a heart anomaly. At the time, Darren and I were terrified as, well, we hadn't expected to hear anything bad and also, we had no idea what his condition meant or how it would affect him.
I was scanned by a fetal cardiologist the next day, a wonderful man, who works at Great Ormond Street Hospital. The doctor confirmed Elijah's condition. He has a right aortic arch with a left subclavian artery and a vascular ring. I know...what the hell does that mean?! We were just left with a very confused expression on our faces. The doctor explained to us that although Elijah's heart was fine in its structure, the wiring was all a bit wrong. His aorta went the wrong way (normal hearts have a left aortic arch) and because of this, he had arteries in the wrong place and a vascular ring had formed around his breathing tube. It was a rare condition.
All we wanted to know was would he be alright? We were told that he probably wouldn't start showing any symptoms until he was weaned (about 6 months) and if he did show symptoms, then there was an operation, which could help. We were also told that a small percentage of children born with a heart condition also have some kind of genetic abnormality. We were offered a test while I was pregnant to determine if he had this condition or not. We decided against it as the test posed a small risk of miscarriage and it just wasn't worth the risk to me.
Well, 22 weeks later, I gave birth to a gorgeous and healthy little boy, who showed no signs of genetic problems or physical problems. We breathed a sigh of relief for the first time in 22 weeks. Because of his condition, we had to go to Great Ormond Street Hospital every 3 months for check ups and tests with the heart team. As he got older, Darren and I started to notice that Elijah coughed...a lot! Violent, hacking coughs, which were worse at night. He also developed a very rattly sound when he breathed, especially when he ate.
At his routine appointment last summer, his doctor decided he should have an MRI scan, to investigate the symptoms further. This was terrifying as he needed to have a general anesthetic in order to have the scan (at just over a year old and very active, there was no way he would keep still for the 45 minute scan). So, we took him into hospital for the day, shed a few tears when he was put to sleep in my arms and then we awaited the results a few weeks later.
When we went for the follow up appointment, our doctor told us quite firmly that Elijah needed heart surgery. We knew it was always a possibility, but somehow, I was not prepared to hear it. The ring, which was around his trachea was constricting it to the extent that as he gets older, he would get more and more lung infections and illnesses and there was a possibility that this might result in needing a new lung. Elijah is already so active and the thought of him having to be restricted to doing only calm activities and having to under go such a monumental surgery when he is a little older, was enough of an incentive to make us agree.
on the cardiac intensive care unit
We were told that the surgery would involve dividing the ring and repositioning the artery. It would take up to 4 hours and he would have a pretty sizeable scar. So, we went home and were told that we would hear when the date would be in about 8 weeks.
8 weeks later and we received his surgery date as the end of November. As his condition is so rare, I found it hard to find anyone to talk to about it, who's child has gone through a similar surgery. As luck would have it, I posted a question on a baby group on Facebook and a lady responded saying her son has the same condition and she invited me to another group on Facebook dedicated to the condition. The group has about 150 people in it, mainly parents and the majority of the members are from the USA. It was very encouraging to be able to speak to others who knew what we were going through and were going through it themselves.
Elijah's surgery date came and we were all ready to take him to hospital - after waking him up at 5am to ensure he had breakfast, as you have to fast before surgery. We then received a phone call saying they had to cancel his operation, as an emergency case was brought in and Elijah's surgeon needed to be present. We were devastated and relieved at the same time. Devastated because you build yourself up and prepare yourself for weeks for this day to come and the thought of having to do it all over again was horrible, but of course we understood that an emergency took priority. And relieved because...well...I didn't want to have to go through with it!
a routine heart echo
A week later, we were back at Great Ormond Street for his rescheduled surgery date. We were psyched up and Elijah had been marked up for the operation...when they came in and told us that ANOTHER emergency had just come in, and he wouldn't be able to be operated on that day either. I'm ashamed to say that I lost it at that point. I was also 20 weeks pregnant with baby number 2, and feeling so emotional and overwhelmed that I just broke down and sobbed in front of everyone. We were assured that they would do everything they could do perform the surgery the next day. At this point, we just wanted the operation over with. It was such an emotional rollercoaster and every time we had to reschedule, we had to bring Elijah in for pre-op tests, which included blood tests and more, so he, although only 20 months, was getting more and more scared and upset.We went home and came in again early the next day. And this time, it wasn't cancelled.
When we had to take him down to theater to be put under general anesthetic, it was the worst moment of my life. I knew in my heart he would be fine, but all I could think of was, what if something went wrong? I held him so tightly as they put a mask over his face to help him drift off and I couldn't stop tears pouring down my face. When he was asleep I just held him and sobbed. The lovely doctors gently took him from me and Darren and I had to wait a grueling 4 hours for the surgery to finish.
When the cardiac intensive care unit called me 4 hours later to tell us that the surgery was over and that he was on the unit with them, we rushed over and were led to his bed. We were warned that he would be covered in wires and tubes and he would have a chest drain and would be heavily medicated to help with the pain. But you are never prepared to see your baby looking ill. As I mentioned, Elijah is very active - doesn't sit still, so when we approached him and saw his little body totally still and wires coming out of him everywhere, we both broke down.
The surgery went very well we were told and he was on morphine and other drugs to help with pain. When we spoke to him, he didn't really respond, but I gave him his favourite, beloved rabbit toy, which he loves to suck on, and somehow, even though he was drugged to the eyeballs, the rabbit's foot found its way into his mouth!
He was in intensive care for almost 2 days...not long at all for such a major operation! The worst part was when they had to take out his chest drain. It was horrendous. He lifted his arms wanting me or Darren to pick him up, but we couldn't and that was heart breaking.
Eventually, he was moved onto the cardiac ward and we spent another 3 days there, while Elijah recovered like a total superstar. His wound looked like a massive shark bite, going from his shoulder blade, around his body to just below his nipple. He also had a nasty wound underneath that from the chest drain and lines in his hands, foot and neck.
The staff at Great Ormond Street were nothing short of amazing. And the children and families we met were nothing short of inspirational. We felt humbled, proud and in awe of the strength these little ones show after the trials and tribulations they go through.
already causing trouble in his hospital bed!
Just less than 5 days after enduring major heart surgery, we came home with our little heart warrior. The stuffing was knocked out of him but he was already acting like his normal, cheeky, funny self. We were told that although the surgery went well, we wouldn't know for sure how he would be till his post-op appointment 6 weeks later. In the meantime, he would be susceptible to illness and we wouldn't be able to pick him up under the arms for about 2 months. He also had 3 different medicines to take every day for the next few weeks.Well. He amazed and astounded us with his recovery. Apart from catching every cold and bug going around and being sore, he carried on as if nothing had happened. His strength gave us strength and we couldn't have been prouder of him.
We had his post-op appointment a couple of weeks ago. All looks good in terms of the surgery, but Elijah's coughing and noisy breathing has not improved, so his surgeon has referred him to see a colleague of his, a respiratory specialist and it is possible that he might need further procedures or treatments. We just have to wait until we see him.
So his journey is not over and, although we are disappointed that there might be further procedures down the line, we are so, so proud of our little boy. He truly amazes us as did all the little ones we meet when we are at Great Ormond Street. We also feel extremely lucky that his condition is one which can be treated. There are so many heart conditions and others out there who aren't as fortunate and we are very grateful that Elijah's can be treated.
Thank you so much for reading this crazy long post. I felt I really wanted to write it all down, as a way of release and also in case there are any other parents out there reading this, who's child needs to have surgery or has been diagnosed with a confusing condition. Know that you are not alone and there are always so many points of support, from friends and family, to strangers on Facebook groups and those you meet at hospitals.
We are obviously firm advocates for Great Ormond Street Children's Hopsital and they have a charity set up for donations and fundraising. If you would like to learn more and possibly donate, just click here.
Belle x
