Tuesday, October 7, 2008

Health and Down Syndrome

Some of you have been asking and wondering what are the health issues associated with Down syndrome. Is there any special care?
Like with any child, there may be some health problems, and like with any child, you will do whatever it takes to ensure that your child stays healthy and provide the best resources for him or her to develop.

It is very true that there can be some serious health issues associated with Down syndrome. Some people believe, that only 20% of babies with Down syndrome make it to delivery, and the other 80% are lost in natural miscarriage (this is not factoring abortion numbers). So every person you ever see with Down syndrome, is a true miracle!

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Nichole has a small hole in her heart. She will be having an echo (a heart ultrasound) next month. Our Cardiologist has not been able to hear the heart murmur in the last couple of visits. He said he was hopeful that the hole in her heart has closed on its own (God is a perfect physician.)
Nichole has issues with Reflux, they will last a little longer than the average baby, but then again, Reflux is common in all babies.
Nichole gets her hearing and thyroid checked every six months. So far, so good!
Even though colds and ear infections are more common in children with Down syndrome because of their smaller passages and poor drainage, Nichole has never had an ear infection. She is however, congested quite a bit, but in the large scheme of things, it is not a big deal.

Low muscle tone. Almost all individuals with down syndrome have low muscle tone. This can be a physical trait, but this is what takes us to therapy each week. Our bodies have muscles everywhere! Our legs, our arms, our core, our tongue.
It takes children with Down syndrome a little longer to achieve certain milestones, such as rolling, sitting, crawling, standing, walking, running, jumping. Think about it, if you had to make your muscles work twice as hard, it would take you a little longer too!
Our tongues are powerful muscles, and we do not think much about that. Some babies with Down syndrome have a harder time when it comes to feeding. Nichole was not able to nurse well until she was about 5 months old, but she did just fine with a bottle. This also means that talking will come a little later. It is amazing how much you learn about all that your tongue does when you talk as you take your baby to speech therapy, talking is really hard work! And so many of us take it for granted.

There are a little extras that we do because Nichole has Down syndrome. We do these extra things because we want her to develop and reach those milestones. We have Physical Therapy, Speech Therapy, and Occupational Therapy. We basically have a whole team of professionals that are here to guide us as we help Nichole grow and develop. How I wish I would have had that with Ellie! It is not a weekly burden, because as a parent, you will do whatever you have to do, and a few hours a week, are no more than a few TV shows. It is that simple, and it is about priorities.

Now for the tougher one. I struggled in how to answer this question, so I will try to answer it as best as I can. Many individuals with Down syndrome have some degree of mental retardation. Retardation, means, that it takes them a little longer to learn things. It DOES NOT mean that they will not, but only, that it takes longer. Intelligence has been measured by IQ. Most individuals with Down syndrome fall into the mild to moderate mental retardation. However, each individual is unique. If there was such a thing as an IQ test to grade the emotional/intuitive level of a person, children and adults with Down syndrome would rank MUCH higher than a typical person. Unfortunately, we only test for Developmental milestones.

I love what my friend Christine from a Down syndrome forum had to say.
Is Nichole retarded, or is she slow?
She is neither.
She has Down syndrome.
She therefore does have some degree of what is clinically known as mental retardation. What this means can vary from individual to individual.
Yes, it may take her longer to learn certain things; however, in some areas she may not be delayed at all.
Until she shows us differently, we assume that she will be able to do the same things as everyone else.
People need to look past the physical features and the stereotypes they associate with these features and look at the individual. They will surprised at what they find.

Which brings me to the word "Retarded." The only "R" word that a person with an intellectual disability deserve is the word "Respect." Next time your friend is acting silly, or someone does or says something stupid, please, do not say, "You are such a retard, "or, "That's retarded." When you say that, you are talking about a people group, a people group that includes my daughter, and they deserve the same respect that you and I do. Before you use that word, think about who you are referring to, what you are implying. Would you say, "You are such a Nichole." Or even more, would you use a derogatory name that is associated to a people group. No, you would not. Because you know that it is not appropriate, you know that it is degrading and wrong. The word retarded is the most offensive word in the English language. It is a word that is used to describe something stupid, something with a fault, something with a mistake, and it is said in expense of my daughter. These are the people that need to be respected, but most important, valued! Because they are God's creation, loved by God.

That was heavy stuff. Did not know I would go there, but I believe this is part of raising awareness. And I hope that a little seed is planted in your heart. These are important issues, and issues that affect all of us directly or indirectly.

Going back to our original topic. There are health issues, and it is important to be aware of these. But like I said before, health issues are present in all babies, weather they have Down syndrome or not.

Other than that, having a baby with Down syndrome is NO DIFFERENT than having a baby. She is a baby! I feed her, change her, get her dressed, give her baths, hug her, kiss her, sing to her, play with her, and love her. Much like I did with Ellie, and much like you would with any other baby.


  1. Awesome explaination Ellen! Do you hear the applause? I couldn't have explained this better myself!

  2. another great post Ellen! I will enjoy reading these as I recupperate. Thanks for all your comments on my blog, they highlight my day...really! Maybe you and I should do a reality show together!


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