Uncategorized

Hello World! (says Baby A)

Although everyone is special, Baby A is exceptional to us because he was born with Total Anomalous Pulmonary Venous Connection (TAPVC). What that means is that undetected we could have lost him, and his little body went through the tremendous stress of surgery, which he recovered so well from that by the fifth month he was already in the 90s percentile for his weight.

 

I had a perfectly normal pregnancy (if you can call no morning sickness, any kind of complications, and super super lucky to have absolutely no stretch marks “normal”), but less than 24 hours after he was born, he was experiencing respiratory distress. This caused much distress for us because there wasn’t really a reason for why he wasn’t breathing well, and it just seemed to get worse. 48 hours after he was born, as we sat there in ICU, looking at his stats getting worse and worse, the hubby decided that something had to be done.

 

And so calls were made, both by our attending paediatrician as well as ourselves, and eventually arrangements were made to have him sent to NUH as KKH’s ICU was full. This was probably the turning point for the little boy. A few hours later, at around 2 in the morning, the attending cardiologist diagnosed him with TAPVC. There were to be a few more scans in the morning, the cardiology and surgical teams would have some discussions, and if all went well he’d be wheeled into surgery the next afternoon. It was also just as well we didn’t get transferred to KKH because as NUH is the leading centre for paediatric cardiology, he would have been subjected to another transfer to NUH again.

 

At this point we were actually more relieved than worried about the news – he started to stabilise and at least now we knew what was going on and what the course of action would be. Of course it wasn’t going to be an easy path for him, or us, but we would take it one step at a time. At at least at this juncture we could see the steps ahead of us and where it was leading.

 

I remember seeing him for the first time after the surgery. He was hooked up to so many machines it scared the s*** out of me. As is the procedure with many heart surgeries, he was left with an open chest for a few days while he recovered – at that time I was a little too emotional and far too queasy to have a look at his heart (literally!) but in hindsight I regret the opportunity – imagine if I could tell him I saw his little heart beating!

 

He was quite swollen after the surgery, but actually looked rather cute since this left him chubby. After all the swelling subsided about a week or so later, he was rather skinny although he had the longest fingers and toes I’d seen on a baby in a while. In those first few days I felt so sorry for the poor boy who was just a tiny baby, meant to be cuddled rather than left out on the cold on a table. Luckily he’ll never remember a thing.

 

After the surgery, this little brave tiger (having been born in the year of the Tiger) fought his way through the recovery. By his first month birthday, he still only weighed slightly more than his birth weight of 3.1kg. We were a little worried initially, and I had to record down how much he was drinking, which meant that I had to pump out everything – not an easy task when you have more than 1 kid to handle!  Luckily as time went by, we obviously did not have to worry about him putting on weight. At 4 months he was 7.3kg, which put him at 97th percentile.

 

I also think that we’re extremely lucky that it’s a physical condition that can be “fixed”, and not an illness or the like. People often ask, what after this? Well to date he’s been monitored every month or few months, and I suspect he’ll have to be monitored periodically for the rest of his life as there might still be the possibility of the vessels constricting in the future. He’ll be downgraded for National Service, for sure though! 😀

 

TAPVC is a rare congential condition, but we are very lucky to have, and have access to, a fantastic health care system, and an institution which although rare, has seen and successfully treated similar conditions. In fact, I heard that we were the fourth case in the year alone. The surgical team is apparently also so well skilled they might possibly be one of the best teams in the world.

 

We’ll be forever indebted to the wonderful surgeons, doctors, nurses and  staff at the National University Hospital (NUH) for their expertise and care and I dare say that Baby A is well and alive today because of them. It’s scary to even contemplate the consequences of the situation if we lived in a lesser developed country!

 

He is now 5 months and seems to be doing well. The doctors have all been very happy with his heart and his weight progress.  He’s becoming a very smiley chubby boy, as the preceding photos will testify.

Enjoy! 🙂

 

p.s. If you have any questions regarding his surgery, please feel free to drop me a line if I can help in any way! I’ve tagged all his posts and photos with “Baby A” and “TAPVC” in case you’re interested to find out more.

Advertisements

13 thoughts on “Hello World! (says Baby A)

  1. Baby A is such a warrior. 🙂

    It’s really refreshing to read someone (You) writing from a different perspective ie, thankful to the hospital team, instead of focusing on asking ‘why him?’ or complaining about the situation. We should have more optimistic people like you! 🙂

    Like

  2. Big beary hug to Baby A and Momma ED. He is indeed a brave warrior and you are a great Momma. Keep us updated with your blog post and I will pop again.

    Like

  3. Dear mummy Ed,

    My daughter is also having TAPVD. She is going to have the surgery next Monday, on her day 14. I am so desperate to find someone has the same experience, please help me! Thanks!

    Like

    1. I hope all went well with your little one’s surgery. My daughter will also be having surgery in a little less than a month. It is so scary, but also such a relief that there are wonderful surgeons that are able to fix this. I would appreciate you sharing information about your experience. My thoughts & prayers are with your family. Thanks!

      Like

  4. This is such great news to hear that your little one is doing so well after surgery! My daughter will also be having TAPVC surgery in a little less than a month. She will be almost two months old. I am so thankful that you shared your experience and any other information would be greatly appreciated. It is such a scary time for us as I am sure you can relate.

    Like

    1. Hi!

      It is so great to hear from you and I wish your little girl all the best! Our boy is really almost as good as new now, and we are so thankful for him and for what the doctors have done. I would love to hear how everything goes in due time.

      Like

  5. Hi,
    my little girl had the same prblem and surgery on her 5th day. She was in very bad condition during the first surgery. First surgery – you might wonder why – the veins got a narrowing after the first (and very fast surgery). So 6 weeks after the cardiologist saw that there might be some problem as the pressure in the right herat part was rising. So we got some investigation and two days before Christmas they told us that she would need a new second surgery which took place four weeks ago by now. We are now back home again for two weeks. This time the surgery took nearly 8 hours but it seems to be all right for now. Our childrens cardiologist is very satisfied with the result. Although I am afraid that these surgeries and the times in hospital and everything might be repeated again and again and again….that ist my personal nightmare.
    Nontheless she is fine now and eating so well that she gained 750g within the last two weeks 🙂

    Best wishes to all
    Nadine

    P.S.: Thank you for telling your story and charing your experiences.

    Like

    1. Hi Nadine

      Thank you for sharing! I am so happy to hear that she’s doing well now! I hope that that will be the last of her surgeries and that she’ll be good as new now, as my son is. It’s one miracle to have a child, it’s another miracle to have modern medicine “fix” them 😉

      Like

  6. Hi there! I don’t know why I didn’t came across your site earlier but still glad I did!

    My son was diagnosed tapvd at birth and had 2 surgery due to some complication from the first. his current condition isn’t too good still and the doctors are still monitoring and waiting to see what they can do.

    I’m glad that your son is very healthy now! I look forward to the day that my son will be the same 🙂

    Perhaps we can have a support group with the rest of the mommies with babies of the same condition?

    X
    Anne

    Like

  7. Hi!

    I wish I found your blog earlier but still glad that I did!

    My son was diagnosed with tapvd at birth and went thru 2 surgery after the first one had some complication. His currrent condition is still not too good so the doctor are monitoring and waiting to see what can be done.

    I’m happy that your son is healthy now! I hope my son will be the same one day too!

    Perhaps we can form a support group for mommies with babies of the same condition?

    X. Anne

    Dennelicious.net

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s