Sunday, March 18, 2012

The Untold Story - Our Single Umbilical Artery Baby

Now, I've already introduced our daughter, C-chan, who is more lovely by the day (and has already passed three weeks of age). That's not to say we (like all parents) don't have our moments at 3am in the morning, when she decides not to got sleep. It's a feeling only parents can know (and dread). However, it's a feeling we wouldn't change for the world. And not least of all, as the pregnancy was far from straight-forward...

We found out in week 23 (just over halfway through) that our baby had what is known as a Single Umbilical Artery (SUA) - the normal umbilical cord has 2 arteries and 1 vein, but an SUA baby only has a single artery. That means the baby has only half the blood vessels from the placenta providing nutrients. This is not that rare, with approximately 0.5 - 1% of births exhibiting it - and is indeed more common in multiple births. Whilst not rare, the outcomes can be quite life-determining for the young baby. Despite this the SUA complication is not something that you hear that much (if at all). There's no clear cause for SUA - and appears just to happen sometimes. Perhaps it's only the advent of high resolution doppler ultrasound that it's been routinely identified during antenatal tests. Thankfully our ultrasound had also shown no other problem indicators.

The difficulty with SUA babies, is that the odds of birth defects suddenly jumps up to between 25-30% of all live births. That's getting pretty damn close to 1 in 3... and at those odds, Russian Roulette is actually better odds. Of course, for 70-75% of SUA babies, there's no apparent problems, and life goes on as normal. The biggest risk is that the baby will be exhibit intrauterine growth restriction resulting in a very small baby - and with issues similar to premature babies. 

We had to wait another whole 9 weeks (week 32) for the next ultrasound to see how our baby was doing. Amazingly, it turned out that our baby was right on the median growth (no mean achievement, especially given that T-chan is only a wee little lass herself). Once again, there were no adverse indicators and everything looked like it was going excellently. We did have a bit of a scare however when T-chan tested positive for pregnancy-induced diabetes... which a subsequent test proved false. We were starting to feel a little more confident that everything was going to be ok. After all, things couldn't be too bad if the baby was growing well...

Then along came the Week 39 scan, just a week before C-chan was born. By this stage T-chan's parents had arrived from Japan, and had come to meet the obstetrician - it was a big thing, and there was much talking and crying going on in his office. Then we had the scan, right there in the office, with T-chan's mum crying for joy in the background. Everything looked and sounded good - and then the obstetrician did the growth estimate measurement. It was quite a shock when we were suddenly told that the baby had only grown approximately 700g in the intervening seven weeks (with an estimated weight of 2,500g). We had been expecting closer to 3,500g! Suddenly, things didn't quite seem real - and we were now looking at a near "premature" sized baby (in the lowest 10th percentile of weights for gestation age). Needless to say we were just a little stressed that week, suddenly wondering if we were spiralling toward the 30% zone of bad outcomes. It was a quiet ride home that afternoon, and whilst T-chan's parents didn't know the full extent of the issues, they knew that this was not in the plan...

Fast forward one week later (almost) and C-chan was finally born after about 5.5-6 hours of labour... and I have to admit completely without our obstetrician who was stuck in theatre for an operation. To our complete and utter relief C-chan looked a happily healthy (and loud) baby girl when she finally arrived. A few minutes later (after some important time lying on mum's chest), they did the measurements. It turned out... amazingly.... C-chan was a very, very healthy 3,530 grams. The last scan had been a complete error! In fact, C-chan was even 10 grams heavier than her older brother L-kun had been at birth. Indeed, subsequent paediatrician check-ups and a fairly difficult ultrasound later (to check kidneys, as SUA babies have 5-15% chance of having problems with kidneys) seemed to show no problems at all.


 I have to admit, to this day, I wish we had not had to have gone through that last week believing that she was going to be born small. Still - for us, it seems that everything had turned out well (fingers crossed), and that C-chan will enjoy a totally normal healthy life. For many families having an SUA baby however, the story is quite different - and far from happy.

My advice is that if you find out that you're baby is SUA, don't panic. Be positive. I know that's not easy to do when you first find out. There's little that can be done except wait... indeed that's perhaps the worst part of it. You can of course ask for a re-scan if in doubt, and there are a couple of invasive tests that should be avoided if you can help it - which may tell you if there's a chromosonal cause to the SUA. There's much however to be said for living with hope, not dread, in your heart as your baby grows in the womb. My other advice is that if you learn you have an SUA baby, be very careful how much time you spend on the internet... as there are countless horrible accounts to keep you sleepless at night. Really scary stories - which I'm not going to repeat here (you don't need the negatives to be reinforced). The positive stories like this one don't have any where near the impact as the negative ones. If in doubt, speak to your obstetrician. Early. Though don't necessarily take their first answer as the end of it.

And remember - don't concentrate on the odds. This is not about being lucky or unlucky. It's not your fault that you're in this situation, and there's little that you can actively do except to be strong. You'll need it for both yourself, your partner and your children.

Life, precious as it is, is also precarious. Cherish it.

17 comments:

  1. Ben, she is gorgeous! Thank you for sharing your story, I'm very glad that everything worked out for you and your family. :)

    ReplyDelete
    Replies
    1. Sue... I have to say that it's a very personal story, and it was a pretty horrible (almost) 20 weeks waiting to see how things turned out. I wouldn't say we're in the clear yet, but things are certainly (thankfully) looking good now.

      Delete
  2. she is beautiful... thank you so much for sharing your journey... congrats on your new bundle of joy :)

    ReplyDelete
    Replies
    1. Thanks d.e... the main reason I shared was to let other parents know that if they are advised they have an SUA that they shouldn't get too anxious (which is hard to say when your in that moment). Of course, that's said with us being confident that we were lucky. Having children is rarely easy - and even when we don't realise it, it can be fraught with risks. Risks always have an upside however.

      Delete
  3. Congratulations. I happy that everything turned out ok.

    ReplyDelete
    Replies
    1. Thanks Jon... still feel a little nervous about it all, but I'd rather feel optimistic than worried at this point.

      Delete
  4. She is one of the cutest babies I've ever seen!

    I've never heard of SUA, but I'm glad your baby seems healthy! You are right, the internet is scary place to go for any kind of health diagnosis.

    Enjoy her!

    ReplyDelete
  5. She is absolutely gorgeous, thanks for sharing her SUA story. Jess

    ReplyDelete
  6. I was almost scared when I read that the baby had weighed only 700g.
    Relieved!

    I am happy for all of you especially for T-chan and C-chan.

    ReplyDelete
  7. Thanks jetsetterjess... she is gorgeous. Even last night when she didn't sleep between 4 and 6am, she was still gorgeous!

    ReplyDelete
  8. Thanks Muravej - but perhaps my writing wasn't that clear. At 32 weeks she had an estimated weight of about 1800g, and at 39 weeks the estimate was 2500g - therefore they thought she had only gained 700g in 7 weeks. She should have gained about 1500-1700g in the same time.

    ReplyDelete
  9. At 31 weeks I found out that my baby has SUA. I have a growth scan on Friday to see if everything is okay. Thank you for sharing your positive story.

    ReplyDelete
    Replies
    1. Thanks for your comment... I hope it all goes well, but staying positive is the best thing you can do. We found the first weeks to be horrible with not knowing what to do, what we could do even. It's a hard thing to wait for tests/scans to be done.

      As an update - things are still looking good, but we're waiting for a +6 month scan for our last test to be done. Hopefully.

      Delete
  10. I stumbled across this post today. We found out our little girl has a SUA just a few weeks ago (we are currently 21 weeks along) Life has been very hard lately and, like you said, its the waiting thats so hard. Not to mention the hoping and praying that everything will be fine.
    I wanted to say thanks for sharing your story, as SUA stories with happy endings are edifying my heart right now. She is beautiful, and I am so happy things worked out for you.

    ReplyDelete
    Replies
    1. Thanks for your comment Alyssa, and I understand how hard it is for you. Always be positive - it's the best way of dealing with the stress, and will keep you that little bit saner through the wait. I'm sure it will all work out... and as our obstetrician said, he thinks the connections that people have made previously may not be entirely there based on recent evidence(and he's a very senior obstetrician here in Adelaide). It certainly helped us to think that way... especially after the initial shock when you find out what SUA means, and that your pregnancy has it.

      Delete
  11. Hi Ben. I've just had my 20 week scan and found out that bub has an SUA. The sonographer said everything else looks fine and didn't seem to worried, just said I will need to have a few extra scans to monitor fetal growth. Just started googling and now know that bub also has an increased risk for birth defects, so am definitely a bit worried now! Thanks for posting your positive story though. I haven't read any negative stories yet, so I think I will stay positive and not google any further, like you suggested. And just wait and see what my caretaker has to say...

    ReplyDelete
    Replies
    1. Hi Anon.... I think that's the right attitude. There's something to be said for learning as much as you can, but this always needs to be moderated against the heightened stress and feelings of helplessness as parents (which is also not good for the unborn baby). I think it helps however to know that it can be a serious condition, and to know that you may need to be extra careful and extra vigilant in terms of check-ups.

      Stay positive and be strong. Our daughter is now 1.5 years old, and doing just fine. In fact she's a bit of an eating machine and very head-strong - but with the soul of an angel (at least most of the time).

      Thanks for stopping by.

      Delete