Miles McGill was born of the 16th of February, 2013. He is an amazing, intelligent, intensely funny little guy who is literally the source of all energy in any room he’s in. But it was not an easy start. Mum Taraneh, tells her story.
When I was 34 weeks pregnant with Miles we had another ultrasound scan of baby, mainly because my 2nd child was so big I needed to be induced early. So it was a check to see the size of Miles and to make sure everything was still growing well since our last scan at 27 weeks. Nothing was detected, we were told everything was perfectly fine and this was going to be our third adorable, healthy child.
His was a particularly painful delivery, his positioning was a bit off so it made for a hard time. But he arrived at 9pm and let out a great big cry and was so pink, and strong and beautiful.
As we were under private care through Birthright, we had a paediatrician there to check him right after birth and that’s when the first signs that something wasn’t quite right, showed up.
They detected a murmur, but assessed it to most likely be a benign murmur that is quite common with newborns and will pass on it’s own. We were given the all clear and were sent off to Birthcare a couple of hours later.
We stayed at Birthcare for the first two days, meeting family members and introducing them to our new addition. The murmur continued but as he was so pink, was feeding well (really well) and didn’t show any other issues, we were sent home, as my other two children were eager to have mummy and their new brother home with them; but we were told to return after seven days to have the paediatrician carry out the one week check and check on the murmur.
At home our private midwife would check on us, always hearing the murmur but no one seemed concerned at all, so we thought nothing of it and got on with figuring out our new family routines as a new family of five.
My husband had the first of two weeks off work and took over the care for the older two children. I took baby to his seven day doctor appointment on my own.
They checked the murmur again, it was still there and by now was so loud that you could hear it by just putting your ear on his chest, but as he was growing, feeding and doing everything that a week old baby should, I didn't worry because no one else was.
The doctor suggested that while I fed him, they’d stick the O2 reader on his big toe just to be “super sure” everything was working as it should. 20 mins later the doctor read the O2 results and his face dropped. He then repositioned the machine to recheck. He then announced he was calling Starship, and sending me immediately for an echo. He said to me, "Baby’s o2 levels are in the 80s, they need to be 97-100, and we need a scan to see what’s happening to cause this”.
In a panic, I called my husband telling him, to leave the kids with my mum and meet me at the hospital.
The next part is a bit of a blur, I remember sitting there by myself with baby while they carried out their exam, not having any idea what’s going on. My husband arrived and we just sat there silently together as they waved the wand over our tiny baby (who still didn’t have a name because we were waiting to see what he was like before we made our choice of what we thought would fit him).
When the Paediatric cardiologist returned, she brought with her the ward’s social worker, and I knew that it wasn’t good, because they always deliver bad news like this.
She told us that Miles had Tetralogy of Falot (TOF). My stomach dropped and all the air left my lungs. My beautiful new baby was sick and I had had no idea. She started to draw some pictures showing us what was wrong with baby’s heart. I had to stop and ask her “Are you saying my baby is going to die?” I looked at him, in my arms, he was so beautiful, his face was just so perfect, (he constantly gets told, mainly by older ladies, oh he’s too pretty to be a boy – whatever that means).
She said “no, not if he has surgery, then he has every chance of a normal life, but this surgery is life saving and very necessary”.
She briefly explained that he’d need a Total Repair where they’d try to patch the hole and open up the valves and expand the stenosis if possible. Surgery would be about six months away as they like for baby to get as big as possible.
They briefly explained what we needed to do if he had a Tet-spell, which is where his oxygen levels would go too far down and we needed to force his legs up into chest to apply pressure to his diaphragm and then call for and ambulance. It was all so overwhelming and so very frightening.
They asked if we had any further questions, we did, we had hundreds but most of them the doctors couldn’t answer then. They handed us a thick folder of information, a contact number for the district nurse who would be in contact with us tomorrow to organise regular home health visits and the details for heart kids, and then we went home.
That night was so hard. After putting the two big kids to bed we sat downstairs with the baby and decided we needed to give him a name, just in case something happened and we lost him. We decided on Miles, because we believed he would go far in life, he’s still got miles left in him, he can’t leave us yet.
His total repair open heart (bypass) surgery was on the 6th of September 2013.
My husband and I handled the diagnosis differently. Anthony wanted to talk, to hear words of encouragement, to vent and to hear from people that things would be alright. I couldn't do that. I wanted to pretend things were normal. I went into a bit of denial and didn’t want to talk to anyone about it. I guess I was scared of three things:
1. If you talk about it, then it’s real and it’s really happening, and that’s just too scary to deal with.
2. I didn’t want his TOF to be his identifier, I was worried that people would stop seeing him and just see his heart defect and that’s all they’d want to talk about; and rather than ask if he’s learnt any new tricks, they’d be asking about his heart and appointments.
3. Even if someone said, oh I'm sure everything will be fine, I didn’t believe that anymore, because all the way through the pregnancy scans I was told everything was fine, the initial week with the murmur everyone was saying that they were pretty sure it was fine, but it turned out it wasn’t fine, so why would this time be different, and how do they know it’ll be fine?
Also, he was just so plump and pink that if you didn’t know he had a heart defect, you’d never had guessed that there was anything wrong and in between appointments, I could forget that we could lose him, and I wanted to focus on that. I’m not sure if that was the best way to go about things but its what I needed to do so that I could stay strong for all 3 of my kids.
The day of the surgery was tough. I’ll remember everything about it for the rest of my life I think. Before we were to walk him to theatre, we had some time together and I went into a dark room on the ward and had, what could have been, our last cuddle together, I sang him a song, rocked him and he fell asleep in my arms, I wanted to remember what his body looked like without scars. I told him that everyone loves him and he can’t leave us.
Handing him over was horrible, and watching him being carried away was even worse.
The six hour surgery was terribly long, but we finally got the call that he was out, and down in PICU. We went and I thought that I would find it so difficult to see him on the bed, but as soon as I walked in, all I saw was my baby and I needed to touch him and tell him I was there, I saw the tubes and wires but I more saw him so it wasn’t as difficult as I thought it would be.
I called my other children to tell them I loved them and would be home as soon as possible, but that the baby needed me and I was going to look after him as I would have done for them if they needed me.
Miles was admitted on the 6th of September and we were home on the 10th of September. Miles blew everyone away with how quickly and how well he recovered. We were out of PICU in record time, out of the observation room on ward 23b, and then home after four days.
While we were there, I met other parents who were going through the same thing as me. Up until then, I had rejected all things that had to do with heart conditions, so I never attended the Heart Kids coffee groups, and didn’t go to any of the functions. I was scared and totally against accepting the reality of what Miles was having to go through. But after experiencing the support and comfort that I felt with being with the only other people who could really understand what things were like (the other heart kids parents) I realised how invaluable that support and connections are.
When home, Miles thrived, once his heart function and oxygen levels were normalised he really took off. He really is 100 miles per minute. And surprising us all the time with his intelligence, his mature sense of humour and quick wit. We honestly wouldn’t know what to do without him.
He’ll need surgery again at some point, and I know now we’ll get through it just like we did the first time, however I won’t go it alone again, I’ll definitely be leaning on Heart Kids and other heart families for support.