Our miracle baby: Introducing Sebastian Michael

This is a bit of a late introduction but we were waiting for the 6-week mark before letting you guys meet our little man. But here we are, almost 8 weeks, so I thought it would be a good time to let you all in on what’s been going on in our lives for the last while and introduce you to the newest member of our family:

Sebastian Michael aka Sebysaurus aka Little S

By the way, this is a loooong post, so grab a cup of tea or a bottle of wine and make yourself comfy.

The 6-week mark was a big milestone for Little S and one which, now that it’s over, I realise was taking a big toll on me. You see, the reason I was the grumpy pregnant woman that I was, was that Little S was a bit more complicated than we bargained for. With Baby J I had a super easy pregnancy, with no problems or complaints. (The problems and complaints came after he was born haha). Not so much with Little S.

When I was 20 weeks pregnant we went to the foetal assessment center for the usual check. I went in first thing in the morning and hoped to be out of there in an hour or so. Instead, the doctor told me the baby wasn’t lying in a good position for her to scan properly so she asked me to go for a coffee and a walk and to come back a bit later. I did, but the same thing happened. And the next time, and the next time. This went on until 4 o-clock when she asked if I could come back another day. To see a heart specialist.

You know that sinking feeling in the pit of your stomach you get sometimes when you realise things are about to turn upside down? This was one of those moments.

I went back a couple of days later and the specialist confirmed what my doctor had suspected: Little S had an aortic coarctation. In English: there was a narrowing in his aorta, which meant the blood wasn’t flowing properly around his heart and so his ventricles were different sizes.

Here is a picture to help you understand what I’m trying to say:

Aortic coarctation

[Ok, so clearly I’m not a doctor by any stretch of the imagination but this is what I understand of the situation. I spent many months trying to get my head around what was actually wrong with S and this is my understanding. Feel free to correct me if I’m wrong and you have a medical degree.]

The thing with a coarctation is that there is a chance the baby won’t survive the birth. Problem # 1. Basically, though they are relatively fine in the womb, the effect of breathing oxygen might cause their heart to stop. Or, if they did survive, they would need heart surgery to correct the coarctation – they would cut the narrow part of the aorta out. Or, if they didn’t have the surgery immediately, they would need to have check ups every 6 months or every year to assess whether or not they would need the surgery.

But that’s not all.

With a coarctation, there is the possibility that it is a symptom of a bigger genetic condition. This syndrome is called DiGeorge (which I always thought was crazy because if Little S had turned out to be a girl she was going to be called Georgina or Georgia). DiGeorge is a genetic syndrome caused by a problem with chromosome 22.

Children with DiGeorge may have learning or developmental delays, hearing or vision problems, autoimmune diseases, facial abnormalities, ADHD and even schizophrenia. There is no cure for DiGeorge but there are different treatments according to the symptoms present in the child. The child may have a lot of the symptoms or the child may have none. The only way to find out if Little S had DiGeorge would be to do an amniocentesis or wait until he was born.

An amniocentesis is when a small amount of amniotic fluid is taken out of the sac surrounding the foetus. This amniotic fluid contains foetal cells so they can give information on the health of the baby. To get this fluid a needle is inserted into the uterus through the stomach. It doesn’t sound like a whole lot of fun, and it probably isn’t. Plus the procedure carries a 1% chance of miscarriage. That may not sound like a lot but when it’s your baby you cannot help thinking – somebody has to be that 1%.

The question was, did we want to take that chance and risk a miscarriage to find out if Little S had DiGeorge? If we did the amnio and the test came back positive then we would know there was a problem and we could somehow prepare for it, but the other reason – the main reason – they suggest the test is that if the test was positive, there was the option to terminate.

Mind-blowing, hey?

I had come in to get a second opinion on a “possible problem” and 20 minutes later they were telling me I needed to decide whether or not to terminate my baby.

[To be fair to the doctors, they weren’t telling me this to freak me out. They are legally obligated to tell you all this. Even though there was only a small chance Little S had DiGeorge there was still a chance which meant they had to inform us of all the frightening details.]

As you can imagine, what followed was a lot of tears, hugs (me and the Beard, not me and the doctors – that would’ve been weird), cups of tea and swear words because I couldn’t have anything stronger. After talking it through, though, we realized that even if the test came back positive we wouldn’t terminate, so there wasn’t any point to taking that risk. We would sit tight and send all the positive vibes in the world to Little S and wait and see what the universe had in store for us. Which basically meant I was an anxious mess for the next 18 weeks.

This was the reason I gave birth at Christiaan Barnard Memorial Hospital. I had Baby J at Kingsbury because it’s much closer to home, but this time the doctors agreed that it was safer for me to deliver at CB so that a surgical team could be on standby if an operation was necessary. They were planning to whisk Little S away as soon as he was out and get him checked out and prepped for surgery if necessary. The thought of this made me really sad but at the same time I had to be thankful we have access to so many amazing doctors and such incredible facilities. I had to trust that they would do the best they could for my Little S. It still sucked though.

38 weeks finally arrived and I was a nervous wreck. The op itself actually went really well, despite my worries, and Little S came out a little purple but fine. Fine! They let me hold him for the shortest time before they whisked him away to get checked and for his heart to get scanned. The Beard went with him while I was wheeled to recovery, where I could do nothing but lie helplessly and wonder what would happen next. And mumble incoherent drug mumblings whenever anybody tried to talk to me.

After his checks Little S was taken to NICU and I was taken to the maternity ward. Because I had a catheter (charming) I couldn’t get out of bed which meant I couldn’t go to the NICU to see Little S until the next day. It might sound weird but this was the most devastating part of the whole experience, not being able to see, be with or hold my baby for a day. An entire day. To rub salt into the wound, my parents and my in-laws came to see him before I could and took photos and videos for me to see him, which actually didn’t make me feel any better.

 

But then the Beard came back with incredible news. They had decided that even though Little S had a coarctation it wasn’t severe enough to need immediate surgery. High 5s all round! They scanned him again the next day and came to the same conclusion. His left ventricle was 30% bigger than the right and there was a definite narrowing of the aorta but even though they decided to keep him in NICU for almost a week to keep an eye on him, they decided not to do the surgery. All we had to do was come back in 6 weeks when they would scan him again to assess his condition to see if and how much it had deteriorated.

Which brings us to the week before last. Taking him back to CB and the heart specialist made me so nervous I was nauseous. We lay him down on the table and the doctor scanned his chest. I didn’t even bother looking at the computer screen – least of all because all I seem to be able to see on those scans are butterflies – but I kept my eyes on the doctor’s face. When he smiled I thought I would pass out, or at least collapse into a total blubbering mess. Completely normal, he said.

At which point I collapsed into a total blubbering mess.

I can now happily say the ventricles of Little S’s heart are now both the same size and his aorta has normalized and no longer has the narrowing. He has a totally normal heart. Totally, unbelievably, normal. We don’t even have to go back to the heart doctor for check ups. No medication. Nothing.

And he tested negative for DiGeorge.

And I could finally have something decent to drink.

Winning at life.

This, my friends, is why I have been a little quiet lately. I have been holding my breath for the last 5 months and I am still trying to process our new reality, our new normal as a family of five (Bacon included). The doctor can’t quite explain how the coarctation disappeared but I’m not really interested in explanations, to be honest.Our Little S is a little champion and even though I’ve believed in miracles for a long time, our miracle baby is now absolute proof to me that they do happen.

Featured image: Photo by freestocks.org on Unsplash

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