The blog of photographer and musician, Kim Ayres

Meg is 9

9 years ago today my daughter was born.

Apparently 40% of children born with Down’s Syndrome have heart defects ranging from a slight murmur that will never amount to anything, through to abnormalities that mean the child won’t last a few hours beyond birth.

Meg’s initial scans didn’t show any problems with her heart, although when she was about 3 months old the doctor thought she could hear a slight murmur. An appointment with a specialist was arranged and it was established that Meg had a small hole in her heart.

There was a time when children with this kind of heart condition would have been operated on when they were 3 or 4 years old, the idea being that it was important that they be strong enough for it. However over time it was realised that forcing the heart and blood vessels to work under these conditions for that amount of time caused irreversible damage, therefore it was concluded that operations such as this should be done sooner rather than later.

Any operation carries a risk and what parent can easily put their baby through an ordeal that requires her chest cavity being opened up and her heart stopped, sewn up and restarted? To say we baulked at the idea would be an understatement. But what was our alternative?

The first few months of Meg’s life were dominated by trying to get her to feed enough to keep her strength up. It would typically take up to an hour and a half for each feed, when she would need to be fed every three hours. Even then she would often throw up every second or third bottle, causing us to weep with frustration as every ounce of milk counted.

What would happen if she wasn’t operated on?

In essence, her growth would be a struggle, she would get steadily weaker and she wouldn’t be expected to live beyond 7 or 8 years old.

We had no choice, but it was an awful decision to have to go through nonetheless.

So at 5 months old Meg had open-heart surgery and I lost any vestiges of belief in a universe that made sense (see Losing my Religion).

It turned out that not only did she have a small hole in her heart, she had a large one too, and several tiny ones. But she survived the operation and her condition improved dramatically. She has now reached her 9th birthday and this has become a significant age to me - had we lived in a time where the medical technology was less advanced she would not be with us now. I don’t thank the universe or any gods - we were just lucky where many are not – but I am so glad she is still with us.

My heart is full of love, pride and awe for my little girl and today I will hold her a little closer, squeeze her a little tighter and try and keep the tears from my eyes.

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Meg's birthday card

UPDATE
"You've had some great presents today haven't you?" we said to Meg during her birthday tea.

"Yes," she replied, "AND it's my birthday as well!"

I guess it doesn't get much better than that then.
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21 comments

PI said...

I had remembered it was Meg's birthday but i'm glad you did a post on her birthday. I am sure you are, as you shoud be, very proud of her. When I was doing my RSCN I never failed to marvel at the sheer courage of children and whenever I have a daunting experience I remember some of the children I nursed and put a sock in it. A big kiss and a hug to Meg and love to all the family.

Kav said...

Happy birthday Meg. Ice Age eh? With Erin it's Dumbo and Brother Bear.

Great post Kim.

Fat Lazy Guy said...

Happy birthday to Meg :)

fatmammycat said...

Happy Birthday Meg. xoxoxo

Jupiter's Girl said...

Love the birthday card. That's so sweet.

To this day, I can't stand when my kids get sick. When they were infants, I was very emotional when they got jaundice, thrush, RSV, and any time they coughed or had a runny nose. The helplessness and fear, mixed with sleep deprivation... I cannot imagine a serious surgery such as little Meg's at such a young age, Kim. What was her recovery like? Blessed be that there is a happy ending.

BStrong said...

Happy B-Day Meg. Lots of Hugs and all that mushy stuff from the northeastern part of the U.S. You’ve got a great dad there Meg, give him a hug too.

Stinkypaw said...

Happy Birthday Meg and that birthday card is too cute!

You're a good, loving, proud dad and it shows - hug to you as well!

Pendullum said...

Happy Happy Birthday to your adorable Meg... Happy Ninth!!!

And give her daddy a big cuddle from me as well... you ole softie... Tears of joy I had reading this...

A Margarita said...

Awww, that is the cutest picture. I love Ice Age. Happy Birthday Meg!

St Jude said...

A big happy birthday to Meg. You are right to be so proud of her, she really is beautiful.

Kim Ayres said...

Thank you everyone for your birthday wishes for Meg. She's had an enjoyable day opening presents, going into town to get a pair of walking boots, having a picnic and running around on the beach(suitably wrapped up against the cold) in her new walking boots, and wolfing down her birthday tea.

I'm completely stuffed having gone crazy when faced with a variety of fatty, sugary foods, which rather undermines the post I've half written for tomorrow. However, at the moment life is good.

quinn said...

Happy Birthday MEG!!!! What a great photo...Hang on to your hat daddy cause next birthday she will be in the double digits!!!

cabronsito said...

I´ve never told you why there aren´t more comments from the cabronsito here on your page, Kim.
Here´s the truth: My English isn´t good enough.
Since the moment I found your site, this is the first article I understood completely from the first letter until the last one.

I do not apologize because I can´t see a reason why. I´m hardly trying to understand what you say.

But I want to say "Thank You" for sharing your "Meg is 9" - thoughts an feelings!

I´m learning from you.
As I´m learning from anybody who has the heart and strength to talk about his/her DS-experiences.

Congratulations to Meg!!!!!!!!

Kim Ayres said...

Quinn - I know, this is the last year of single digit birthdays.

Cabronsito - I know the entries on my site are quite varied, so not every post is going to appeal to every reader.

I also know from trying to read your site that the translation software doesn't always help.

Some of my posts are about Down's Syndrome, but very few. It's one part of my life with Meg, but not the only part, so most of my posts are about my life - being a father and husband, and dealing with a midlife crisis.

I'm pleased if you enjoy reading some of my posts and I'm glad you take the time to comment on them.

jotcr2 said...

Happy birthday Meg-meister.

Stella said...

Aaw "AND it's my birthday as well" - that is so sweet - what a great day she had, presents AND her birthday!!! That's what I love about Sarah too - her ability to see the "Wow" factor in the simplest pleasures. Whenever Sarah receives a gift, no matter how small or insignificant, she is SO thrilled and I think the joy for her is the fact that someone has thought of her - "It's the thought that counts" really rings true for Sarah.

Sarah had heart surgery too, although she was older than Meg, almost 4 and that was because they expected the hole to close on its own but it got bigger. In fact when she had her heart check at 3 she was given the all-clear for 2 years but 8 months later I noticed her becoming breathless and brought her back to be told she needed surgery asap. The worst moment for me was when I left her in theatre in the hands of the surgeons......still makes me feel sick to think of it. Actually Valentines Day/Meg's birthday is the anniversary of Sarah's surgery 11 years ago.

Delighted to hear the birthday girl had such a good day. Lovely post Kim.

Kim Ayres said...

Jo - thanks :)

Stella - as Meg was wheeled off to surgery it was truly horrific, fearing that it might be the last time I saw her alive. I think there are parts of me that have never really gotten over that whole experience

Jen said...

I know all those feelings you described. Knowing how well Meg is doing at age 9 is very encouraging to me! I hope her birthdays just keep getting better and better!

Attila The Mom said...

Oh boy, they grow up so fast, don't they?

Happy Birthday to Meg!

Kim Ayres said...

Jen - I know you've just been through it yourself. You'll have lots of birthdays to celebrate with Evan now.

Attila - don't they just!

Katie Roberts said...

that is a truly beautiful story kim, thank you

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