Congenital Heart Defects

A friend messaged me on Facebook recently with a simple yet desperate message.

"My baby needs to have open heart surgery. We meet with the surgeon on Monday."

Those two sentences seem so simple, yet to a mother whose child is facing the necessary evil of fixing his or her heart, those sentences are loaded with meaning. The anticipation of the surgery date. The fear the surgeon will have gotten up on the wrong side of the bed that day. The wrenching and awful grief of potentially loosing a child. The upheaval in family life as mom and dad spends most of their time at the hospital, worrying about the child in the bed in front of them AND the children in their beds at home. The concern of giving correct medications, proper bandage placement, and combating the occasional bad nurse all creep in, adding to the stress.

Having lived through this nightmare (and coming through it with flying colors) I feel it's my duty to try and ease other parent's fears and concerns. One of the very special gifts given to us by an online stranger that helped to prepare me and my husband was access to their child's heart surgery pictures. Yes, they were graphic. Yes, they were personal.

But you just can't imagine how they helped to prepare us for the way our daughter was going to look.

Sometimes we assume that after a surgery, our children will look much the same as when we nestled them into the surgical nurse's arms and they were whisked away through the labyrinth of hanging privacy curtains and warren-like rooms. The same beautiful face and body, except now with a functional heart.

Don't assume.

I'm sharing my child's surgery pictures in hopes that we can help other families going through this. Children with Down syndrome have a 40% chance of having some type of congenital heart defect, but thanks to today's advanced technology and surgical techniques, surgeons can repair almost anything. Statistics are on your side! Heart surgery has very high success rates; 98-99% depending on where you look. Those are great odds.

Posted below are Madison's surgery pictures. WARNING: EXTREMELY GRAPHIC!

This is Madison at 3 months of age, still at 7 pounds. Four days before surgery.

This is right after surgery. It's really freaky to see your 3 month old with a respirator breathing for her. Very mechanical and scary.

Early the next morning...still all kinds of tubes, drains, and wires. At least no respirator. It's a life-saving machine, but I was glad to see it go.

The sheer volume of equipment used in the NICU still boggles my mind. And my baby was hooked up to each and every one of those machines. 

Day 2 in the evening. She's looking better but still hooked up to most everything.
 

Hello, Baby! First time opening her eyes with a good-as-new heart, and I was there to see it!

This is my FAVORITE hospital picture of Madison. It's been 3 days now, and the nurses are remarking to me how fast she's recovering.

Day 4. Some of the drains and other tubes have been removed.

Day 5. Hooray! They disconnected the pacemaker. The wires are still left in-just in case it needs to be re-connected. She's looking GREAT!
 

Day 6. We got moved to a "regular" room. She looks so TINY in that bed!

Little bean in her giant bed.

The end of Day 6. All packed up and GOING HOME!!!!!!!

In three months, she doubled her weight. By the sixth month, her scar faded. She has been going strong ever since, and we are eternally grateful to the doctors, nurses, and surgeons who all performed to the best of their ability to save Madison's life. I wish every parent whose child is going through open heart surgery the best of luck. In some small way, I hope this post will help you. Hugs and prayers to you.

A Child First

I am MAD. Steaming, hot-potato angry. Teeth-gritting, fist-pounding MAD.

Here's the latest ignorant question from a well-meaning person, and the incredibly stupid answer. (paraphrased, because I deleted the link in disgust)

Q: I am a fifth-grade teacher, and one of my students, a girl with Down syndrome, displays an inappropriate fondness for older boys and men. I'm wondering if inappropriate sexual attention is a symptom of Down syndrome and how can I help this little girl?

A: Unfortunately, sexual acting out is common with mentally retarded kids and hopefully it's a phase. Other than that I can't help you.

Can we just say GRRRRRRRRRRRR!?!

First, "inappropriate sexual attention" is not a SYMPTOM of Down syndrome. More likely, it's a result of this poor child getting abused in some way. Kids and people with intellectual disabilities are more vulnerable to abuse of all kinds. (Including the abuse of widespread misinformation.)

Teacher, I know you didn't know, and I'm glad you asked. I just wish you would have asked a more reputable source. Here's another source. And another. Scroll down and read the part about sexual abuse.

Second, to the person who answered the question in an incredibly discriminatory, uninformed, and decidedly unhelpful way, PLEASE, for the sake of us all, if you don't know what you are talking about, SHUT UP. You are spreading lies, myths, and misinformation based on prejudices and discrimination.

This hurts my child and all others like her.

She is a functioning, normal member of society, and I don't appreciate you tearing that down, causing people to think differently about her.

I'm sorry if that was rude of me, but I don't care. Just because a child has Down syndrome doesn't mean they are not a child. They are CHILDREN FIRST, not a condition, disease, or group of symptoms.

Look closer, teacher. Your student is more like the others than you ever imagined.

It's Time.

Two years is a long time.

Milestones reached and not reached. Words spoken and not spoken. Sinus infections galore. Lots and lots of hugs and kisses. Potty training? Not yet.

She may not be fully talking yet, but she sure knows what you are saying. She knows right from wrong. She loves her family, and especially her brothers--she does everything they do, including tackling them.

Swimming, Grandma's house, hiking, movies. Church, preschool, grocery store, mall.

She even rides the bus to school.

She does it all, a fully included member of our family and community.

And why not?

Perspective on Palin

Recently I was asked my feelings concerning Sarah Palin, and her effect on the Down syndrome community in general.

Two words:

Love Her!!

All politics aside, when she and her husband first had Trig, we all knew it. And we rejoiced in the fact that Trig was loved and not discarded like so many are before they are born. We welcomed her into our hearts as a soul-sister into the club of extra chromosome.

Then when she was picked as Vice President by John McCain the national spotlight hit and man, it was blindingly hot. So many issues, so many emotions, so many divisions. People have their feelings about who they want to support.

In one forum I am active in, mostly she received support from the members. There were some Obama-ites who really couldn't stand her, even with the common bond of having a child with Down syndrome. There was a lot of accusations and name calling until the forum owner put a stop to it.

In general, she has caused quite an uproar in the Down syndrome community! I think it's great. Most people totally support her and absolutely love her, not only for who she is but for her promise to us as parents as given in her speech at the Republican convention:

And in April, my husband, Todd, and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.

That's how it is with us.

Our family has the same ups and downs as any other — the same challenges and the same joys.

Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message:

For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House.

She may not be perfect, she may not have all the answers, she may even disagree with me on some political issues. I don't care. She's my girl, my choice for VP. I was going to vote begrudgingly for McCain-if only to thwart Obama from getting in-but now? I am back in this election, baby!

Would you cure your child of Down syndrome if you could?

Why would people be against a cure for Down syndrome?

One theory is that it's all about pride and acceptance. To want to cure something implies that the something is bad or abnormal, and people don't want to feel thay they are bad or abnormal. They want love and acceptance, and can you blame them?

Why can't we love and accept those who are different now, and if there was a cure why can't we accept that too if the person wants to be cured?

I love my daughter with all my being. I am so proud of her and think she is the most adorable thing ever. I love other people with DS, too. There is just something about them that is very special. It's like looking into the eyes of God.

On the other hand, I am also sad for my daughter in some respects. Yes, she will achieve to the best of her ability, find happiness, and have a good life. She makes people smile.

But there will also be things she will never do. She will always have to struggle. She will be the butt of jokes from cruel people. She is more vulnerable to predators. She will have trouble with speech. She has a higher chance of becoming sick from a myriad of diseases including Alzheimers and leukemia.

Despite the struggles, she WILL have a good life, she WILL inspire people, she WILL help in promoting acceptance and awareness of Down syndrome, and she most definitely WILL love and be loved for who she is.

So would I cure my daughter if I could? I think I would, with mixed feelings. I would miss some things about Down syndrome, but as for the health issues, I'd kiss them goodbye and never look back.