The blog of photographer and musician, Kim Ayres

How's your heart?

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Carole, on her blog Fractured Thoughts, mentioned the other day about it being a year since her granddaughter, Nebraska, had open-heart surgery. The photo of the wee lass, post-operation, twanged all sorts of emotional strings with me as Meg went through an almost identical journey when she was tiny.

Meg’s operation had a profound effect on me, which I’ve written about elsewhere on this blog (see Losing My Religion). But had we not put her through it, she would have been unlikely to live beyond the age of 8 (see Meg is 9).

This is now, dare I say, a relatively routine operation. But it wasn’t always the case. Around 40% of children born with Down’s Syndrome have some kind of heart defect, ranging from a mild murmur that will never be a bother, right through to hearts that give out shortly after the child is born.

It wasn’t until relatively recently that a) these operations were performed early enough to have the best effect, or b) they were even offered to children with DS.

But then it’s only been a couple of decades since they stopped immediately whipping away children born with DS to be put in institutions, while it was recommended to the parents that they just tell friends and family their child was stillborn.

Born in almost any other era, or even today in certain other countries, Meg would not be alive now.

By coincidence, I took Meg along to see the consultant today for her heart check-up, nearly 10 years after her operation, and everything sounds fine. She will be seen again in 4 years, but it was quite obvious the consultant doesn’t expect to find any problems again.


Meg aged 5 months


Meg aged 10 years
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37 comments

Carole said...

I love these pictures and gives me hope that I will see Nebraska at 9 and 10 and hopefully for a good long while.

Did Meg ever not have beautiful hair? Nebraska is just beginning to grow hers and she is 15 months old.

Amy said...

Meg looks great! I too am so grateful that Joe's heart was repaired but going through the surgery (and afterwards in the ICU) changed me forever.

I hope that Joe grows up to be as big and as fabulous as Meg.

Now, back to fighting with the school system....

Freakazojd said...

I cannot possibly imagine what it must have been like to watch Meg go through surgery like that, especially so young. However, I LOVE the photo of her now - she looks like a beautiful girl with a conquering spirit. GO MEG! :)

Mary Witzl said...

What a contrast there is between those two photos, and how great it is that they now offer this surgery to DS kids.

Many years ago, I volunteered in a pediatric hospital and one of my jobs was feeding a boy with DS. It took ages just to get him through lunch; he was bedridden and the quality of his life was virtually nil. I wonder what he would have been like if he'd had that surgery as a baby. It is so sad to think that this was denied him because he had DS.

And what a great haircut that is! Tell Meg I'm due to have mine this Saturday!

Brave Astronaut said...

I sat in front of this post and drafted a comment several times. It never sounded right. But I really wanted to say something, so here goes.

As a father, I don't know how I would manage if faced with what you went through with Meg. I have trouble when my son has a cold. I hate seeing him sick.

You truly are an incredible man and it is surely for that reason that Meg has become an incredible young woman. I am very humbled to be a part of your circle.

Kim Ayres said...

Carole - you know how it is with hair - you start off with a little top knot, then you progress to pigtails, then you plait it, then you get sick and tired of the amount of care it takes and chop it all off...

Amy - Joe is already growing big and strong :)

Freakazojd - thank you :)

Mary - I hope you're going to post before and after pictures of your haircut!

Brave Astronaut - You would manage because you have to manage. No one would chose to go through that if they didn't have to. As a parent you will do anything you can for your child. I'm not an incredible man, I'm just a father. But you cannot go through the experience without it having a profound effect on your outlook on life

savannah said...

meg is gorgeous, sugar! her spirit/smile fills her face. may t always be so for all y'all!
*hugs*

karatemom said...

Amazing! ...Look at her now!!

Yesterday there was a huge two page article in our local news paper on the subject of D.S. ( and how they are having genetic testing done on all women now not just the over 40 women)(( to give them oportunity to abort should they choose)).... and one father writing of his experience with his child.

The article was amazing as he spoke of his original fears and thoughts and expectations for his life with a child with D.S.

He talked of how he battles now from time to time with some guilt, as there was a time he had wished that they had chosen to abort their child.

He talks of his incredable child and the joy he has now.

The most incredable things he wrote of however, reminded me of your last posting "your interview" and some of the questions asked.

This father brilliantly reminded readers that it is the difference of 1 chromosome that causes D.S......and it is also the difference of 1 chromosome that determines male or female....
Why the big deal?
It really helps people to stop and think about things.

fatmammycat said...

Aw, the photo of her as a baby would break your heart, but as someone said the contrast is the real joy.

Ubergeek said...

In our behavioral science class, way back in the first year of med school, we had to pick which disease we would want to have (from choices like chronic heart disease, cystic fibrosis, muscular dystrophy, etc), and explain our choices.

Believe it or not, I picked Down's Syndrome. The reason why is that they are some of the most lovable people I've ever met. They're consistently happy, loved by all who meet them, and generally lead very fulfilled lives.

What I'm trying to say is that I'm sorry you had to pass through rough times, but I'm sure your daughter is charming and happy, and will live a healthy and happy life.

Fat Lazy Guy said...

Glad to hear the visit to the consultant went well man :)

amy flege said...

oh look at her as a baby! how sweet. she is truly become one beautiful girl with her heart fixed!! we were fortunate enough not to have heart issues with mayson. i am so thankful for that.

Kim Ayres said...

Savannah - :)

KarateMom - there is so much ignorance about DS, that most people see the DS first and only some see the person. And when a condition is seen as bigger than the person, the humanity is lost. Once you see the person as a person first, then the condition comes second and it's no longer such a big deal.

FMC - it absolutely broke my heart

Ubergeek - while I do appreciate the good intent in what you say, you need to be careful about generalisations. To say people with DS are like this or like that is to define them by their condition. Meg is loving, but she is also awkward, stubborn, and at times a complete pain in the arse, just like any other child.

Primarily Meg is Meg. She has DS, but that is only one characteristic of who she is, certainly not the defining one.

If you read any of the blogs by parents of children with DS, you very quickly discover that people with DS are defined as people with DS, and not DS people. Although this might seem a subtle distinction, it is in fact quite profound as it comes back to how the person is seen and interacted with. Are they a person who has DS, or are they DS first with the person second?

If I sound touchy about this, I apologise. As I said, I do appreciate the good intent in what you say. But I also know that if you read the blog of any parent who has a child with DS, they will just about scream if one more person says to them "DS kids are such happy, loving children".

If you want to discuss this in more depth, please email me. Don't feel awkward about it :)

FLG - thanks :)

Amy - I love your latest photos of Mayson in the mirror - too cute :)

Jen said...

Good news all around!

Your experience with Meg's surgery and its success was a great comfort to me as we faced Evan's surgery last year. It looks like she is still doing wonderfully!

Kanani said...

Something like that just rips you apart while you're going through it. But it's wonderful where you're at now --looking back and being able to see a strong healthy daughter.

When I was a kid in the 60's, there was a couple whose child was "mongoloid." The only thing we ever heard about it was that she was living in an institution. It seemed to be an overwhelming sadness to everyone who mentioned it, and to the parents as well.

Tricia said...

She really is just a beautiful gal! :)

Kari said...

The before and after is so cool!! Love it. Beautiful baby and gorgeous girl!! 4 years is awsome!!!

Ubergeek said...

Kim,

I apologize if my previous comment came out wrong -- I had a suspicion when I wrote it that it wasn't coming across the way that I meant it. When I was in high school, one of my good friends had a brother with DS.

He was such an amazing person. And yes, he had his moments of being stubborn or rude, much like any person. But his in his heart, he always meant well.

It was he who changed my mind as an ignorant high schooler who knew nothing of those who are "different". I learned to appreciate that although someone may not look/talk/act the way I do, that doesn't mean that they should be outcasts of society. They are just as deserving of love as the rest of us.

Again, I apologize if I upset you for my unintended generalization. You are completely right that no one should be judged (for good or for bad) by a group in which they happen to fit. Every person is an individual, and should be seen as such.

That being said, I'm happy to know that Meg has such an obviously caring father :-)

Tom said...

The first picture hits me in the gut, the second helps me breath again. Brings back all those memories of Ian in a similar state.

karatemom said...

p.s....
I was born with a heart murmur...tomorrow I am going to hosp for an ECG and a heart ultra sound to check on some symptoms I am experiencing.
Keep your fingers crossed for me .

Julie said...

Meg as a baby just makes me want to scoop her up. And seeing her with her new haircut makes me want to dance. She's a lovely girl with wonderful parents.

And don't fool yourself... you haven't done what you've done for her just because you're her father. You have figured out the whole love thing, too.

An old roommate recently signed away his parental rights to his daughter who was diagnosed with Diabetes as a young toddler. After his divorce, he fought for custody and they finally spent the last year and a half together. They've both had some health issues. He decided it was too much to deal with and sent her back to her mom. That's when she she found out that he had terminated his parental rights.

I've spent quite a bit of time with his daughter and I don't think I've ever been more impressed with a teenager. She's sweet, respectful, witty, and smart -- at a point that I was my most difficult and certainly didn't want to hang out with grown-ups.

Jupiter's Girl said...

I'm with Brave Astronaut. My Julia had RSV when she was an infant and I nearly lost it after 3 sleepless nights and days. I am a mess when my kids get sick. If I hear a cough coming from another room, I get very alert, and somebody better explain why they coughed. I start dosing right away - echinacea/goldenseal, zinc, vitamins, plenty of water. Ohhh, not good. I fear death right away. I am not afraid to die, but I cannot stand the idea of losing one of my little people.

As for Meg, she's so pretty and sounds to me like she has a well-rounded personality. There's plenty of room for improvement in the medical profession, but they are doing such amazing procedures these days. What an adorable baby she was. She looked so good for having such a serious operation. Glad, too, that the prognosis is good.

I went to a wake last night. The deceased has a grown son with DS that was comforting others. I had tears in my eyes, but then he made me smile with his attitude.

Kim Ayres said...

Jen - Hope Evan's cardio check up goes well this month

Kanani - You think attitudes are moving forward, and in some ways they are, but there are times when you feel like you're banging your head against a brick wall.

Tricia - thank you :)

Kari - it is great to not worry again for 4 years, and even then it should be straightforward

Ubergeek - thanks for commenting again - I glad I didn't scare you off :)

Tom - it still hits me in the gut. I don't think it's something I'll ever truly get past. Seeing Nebraska on Carole's blog did the same. But that's why it was so important to post with the 2nd photo. Even 10 years on I need to remind part of myself that I did the right thing by letting people open up her chest - that part of me that feared I could lose her if I did, which meant that I was gambling with her life, even if the alternative was a guaranteed slower death sentence. If she had died in the operation I would have been distraught at not getting extra years with her. I know you know exactly how I feel. I was so relieved for you that Ian's operation was a success.

KarateMom - my thoughts are with you. I wish you all the best

Julie - I still believe I have done what most fathers would do. Some fathers are selfish bastards, but most want what's best for their child, even if they are confused about what that best is.

Jupiter's Girl - If I think there's a genuine illness I'm ready to drop everything and drive at breakneck speeds to the hospital. Unfortunately my default reaction to claims of illness tends to be that they're faking it, until I get a bit more proof. I've even wondered if my son was forcing himself to throw up on occasion. Of course he wasn't but the suspicion is a fault of mine.

This attitude has even played havoc with my own condition. If I've been more or less OK for a day or 2 I tend to forget I've got CFS and assume I've just been exaggerating things in my own head. That is until it feels like the plug's been pulled out and I flop down in extreme tiredness, feeling weak and useless. Then I remember it is real after all.

Dr Maroon said...

It's 10 to 8 and I've just been told to log off (library closing), so I'll have to return to this.

Namaste said...

wow. i love meg.

Sandy said...

Hi Kim. This is a lovely blog - a bit of a reflection here on the guest interview you gave last week (or was it the week before). It's good to see that, after the growth of materialism and people saying that most things are generally going downhill, some human attitudes are improving, and it seems that societies view of ds is one area where this is so - let's hope it continues. Keep well down there in old D&G and hope to see you about, Sandy

Kim Ayres said...

Dr Maroon - we should all support our local libraries!

Namaste - :)

Sandy - it would be good to catch up :)

PI said...

The top photo reminds me so much of the brave little scraps I used to nurse. I never cease to wonder at the courage of these children and they are a constant shining example to me personally. It must have been such a frightening time for you both and so joyous now she is fine. A big kiss to Meg.

Sam, Problemchildbride said...

What a treasure she is. I can't imagine how frightening it must have been to watch your baby go through heart surgery. But here she is, ten years later, a triumph of life love and science. May she continue to thrive and be happy.

Kim Ayres said...

Thanks Pat :)

Kim Ayres said...

Just missed you in the ether, Sam - thank you too :)

Stinkypaw said...

Look at her now! Beautiful and full of life!

jotcr2 said...

5 months, must have been TOUGH.

Chris said...

John went through had open heart surgery when he was 5 months old. Just seeing Meg's scar brings me back to that surreal time in the cardiac PICU. I can only hope my little guy is as cool as Meg when he is 10. She is beautiful.

rickismom said...

Cute picture. She looks about as spunkey as my daughter (Ricki is 13)

starrlife said...

I love that pic of your gal! Just familiarizing myself with your blog and want to wish you a Happy New Year! My daughter had her heart surgery at age 4 and we were all pretty traumatized. She'd had no effects prior to the surgery so it seemed queer having a seemingly healthy little girl go into such a serious surgery and come out with a scar that still makes my husband wince. Sigh....

Kim Ayres said...

StarrLife - thank you for taking the time to explore some of these back-posts. I'm really pleased your daughter's surgery was a success :)

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