Down Syndrome Awareness: Can People With Down Syndrome Have Babies?: Answering Your Questions

With an extra chromosome, can people with Down syndrome have babies? Will those babies also have an extra chromosome?

Great question! In the past, it was believed that males with Down syndrome were unable to have babies. Basically they believed them to be infertile. But let's be realistic, people with Down syndrome have only been "allowed" to date an marry as of recently. I say "allowed" because somehow we took away their right to love and be loved in claims that their intellectual IQ made them unfit to marry, yet, what they know to do best is love.

Now a days, individuals with Down syndrome are dating and getting married. Some of them are even having babies. However, the choice of having babies continues to be controversial, and a hard choice to make, as it usually involves family beyond the couple. Many couples choose not to become parents because they are unsure they are able to parent a child without help.

But the questions is, can they have babies? And will their babies have Down syndrome too?

In order to understand what happens when sperm and egg of people with Down syndrome unite, we need to look at the basics of cell reproduction.

There are two ways in which cells reproduce: meiosis and mitosis.

Mitosis: This is how all cells (except sperm and egg) reproduce themselves.
"A process of asexual reproduction in which the cell divides in two producing a replica, with an equal number of chromosomes in haploid cell."

Meiosis: This is how sperm and cell reproduce.
"A type of cellular reproduction in which the number of chromosomes are reduced by half through the separation of homologous chromosomes in a diploid cell."

We all have 46 chromosomes, therefore, egg and sperm have 23 chromosomes each. When they unite, you get 46 all together (23+23=46)

People with Down syndrome have 47 chromosomes (an extra 21st). Now picture the 47 chromosomes reduced, or divided in half. You get one "half" with 23 chromosomes (or a typical cell) and one with 24 (with the extra 21st chromosome)

The grid bellow, shows you what the chances are for two people with Down syndrome to have babies (assuming that both individuals are fertile and able to procreate).

As you can see, for 2 people with Down syndrome having babies, the chances are as follows:
-25% chance their child will be typical (no Down syndrome)
-50% chance their baby will have Down syndrome
-25% chance there will be no viable pregnancy

Although Down syndrome awareness month is done, if you have any more questions...ask away!

Internet Out

It seems like my computer at home is having some problems. All of a sudden it is not connecting to the Internet.
At first, I must admit that I was a little frustrated, but now I am thinking maybe God wants a little more of my attention, and "suspending" the plug might be a good thing for me.
During Lent, I took a "break" I limited my on-line activities, realizing that it is sort of an addiction in my life. I am thinking that maybe now I can have some time to do the things I need to do and actually want to do!
I can get working on my book proposals, actually write some more, and clean my house!
I still have a couple of questions to answer for Down syndrome awareness, and as I am able to come to the Library (like today) I will answer those.
Yesterday Nina and I went to Mayo for a Cerebral palsy Clinic Day and I will update as soon as I can. I just have to say that it was a very long day, but I learned so much about Nina, CP, and therapy. There is much to share about our girl.
See you in a few days!

Pete the Purple Pumpkin-A Sibling Perspective

Pete the Purple Pumpkin

By EmmaLee McDonald

(Dedicated to EmmaLee's little brother Toby, who has Down syndrome)

There once was this purple pumpkin named Pete. Unlike any other pumpkin, Pete was purple. Every fall he hoped he would get picked. But every fall he didn’t get picked, he wondered why. He thought, “Sure I might be purple, but you can still carve me and eat my seeds.” The only thing different was his outside. People would look at him and then laugh. Every pumpkin thought that Pete was the kindest, sweetest pumpkin ever! They also wondered why Pete wasn’t getting picked. Now, Pete was getting older and the farmers said that if Pete didn’t get picked this fall, he would have to be thrown away. Pete didn’t want this to happen, so he hoped this fall would be different. Two days went passed and people only looked at him and laughed. Then, the next day, a little girl with a pink tutu and a tiara looked at Pete and said “I want this one.” Pete was so overjoyed. This girl loved Pete the most. Once this girl carved him, she placed him on her porch. That evening, she saw all of the neighbors on her lawn. Hoping they weren’t making fun of Pete, she ran out. Then, she realized what they were all staring at. It was a light brighter than any she had ever seen, shining from within Pete, without even one candle. It was a light that shown from within. Then, people came from far and wide to see this bright, little pumpkin. Just imagine what the world would have missed if Pete were simply thrown away. Even though people may look different on the outside, true beauty comes from within.

EmmaLee is twelve years old. Amazing, huh?

Leave EmmaLee a comment telling her how much you love Pete the Purple Pumpkin!

Thanks Gillian for sharing this on your blog.

And don't miss the previous post from the day with pictures of my little girls' creations.

Color and Paint

A few months ago, as we were getting ready to begin our journey with homeschooling, I bought the book, "The Great Big Art Activity Book." Ellie loves to draw, color, paint, and craft away. Homeschooling, for Ellie, needs to have enough creative fun.

I love this book! It has different sections for drawing, painting, world art, sculpturing, and printing. I am able to pick and choose projects that I know Ellie will enjoy and that will help her be creative and practice some skills.

Today, we had our first official Art lesson, and Nina decided to join in the fun. Nichole was not interested, so she hung out with her daddy.

We looked at all the different ways to create texture when we color. We did crosshatching, curved lines, short lines (for fur or feathers), dotting, smudging with oil pastels (our favorite!) and even turned a scribble into something creative!

Ellie did a great job and her creations ended up being pretty sweet!

We then painted a color wheel. We started with primary colors and then we mixed our very own orange, green, and purple. Ellie really enjoyed this activity, and found the "perfect" color combinations.
Nina of course, wanted to participate. She has a very hard time with coloring and drawing. Tracing is hard! But, she has come a long way since she got home. She had never held a crayon before, and now she tries hard to color and be precise with her pencil strokes. Although I helped her a lot for this creation, you can see that she is getting it, little by little.
Nina's color wheel was phenomenal! She loves to paint, and she had never tried to stay within lines. I know she gets to practice at preschool, but I was so proud of her! She needed help mixing the colors, but she did all the painting, all by herself! No help from mommy!

The Power of Words

I learned English as a second language. When I moved to the United States at age 17, I felt confident living life in "English." However, my scholarly English did not know much about slang words, puns, or the fact that the English language is ever changing. Some words, over time, change their meaning.

One word that has changed in meaning over time, is the R-word (retarded.)

Back in February, when there was controversy going on with this word, I wrote a post about how our family feels about this word.

Words Are Powerful, Words Hurt

Some have said we have pushed the limit in what is “politically correct.” But is it? Is it wrong or offensive to use the r-word? Is it really a damaging word?

I want to tell you about our family. I hope after you read this, that you will understand the power of words, and that some words, even when not intended to be harmful, can slowly destroy.

When my daughter Nichole was born, her diagnosis of Down syndrome hung over me like a heavy, wet, blanket. It clung to me. It robbed me from any feelings of love and I wondered if there was a way out. My motherly instinct was nowhere to be found. I went through the motions of holding and nursing (pumping actually) because I had to, not because I wanted to. I cried. I cried several times a day. There was fear in the unknown; there were questions about the future, about our family and my oldest daughter.

Down syndrome. I knew many things about Down syndrome, and I knew of one word that would be used to describe my daughter. It was the R-word. Retarded.

I knew that someday, someone at her school might say to her, “Hey you retard!” With many laughs to follow such a comment. Or we might hear someone explaining her behaviors to another by saying, “She is retarded.”

There was something I knew about the word retard or retarded. It is a word used to describe something or someone that is stupid, ridiculous, or inadequate. It is a word used to make fun of others, to point out their flaws, or to put them down. It is a word used to destroy, to tear down. Was this really a word that would describe my daughter? Was it okay to call her that in claims of it being a "medical" term or condition?

Thankfully, it did not take long for me to discover that my daughter was not what the word "retarded" means. My daughter was and is beautiful. She is not stupid, she is not ridiculous, and she is not inadequate. She has taught me more in her lifetime than I had learned in mine. She has been the greatest teacher I have had. She has inspired me more than anyone else I know. She has changed my life, the lives of our family, and of those that have gotten to know her.

My daughter has the ability to touch hearts and change lives. A quality that cannot be said of all people. She has shown me more love, joy, kindness, gentleness than I had ever known before. Indeed, her life has great meaning, great value, and she has so much more to offer.

And yet, the word “retard” continues to hang over us. Why? Because it is a word that continues to be used in a derogatory way. It hurts. It hurts our family. We fight this word, every day, every single day. We fight this word because everywhere we go, her characteristic features of Down syndrome set her apart. The stereotype that the word “retard” has perpetuated is engrained in our society, and so we fight against it, because she is so much more. She is full of potential, love, and joy.

There are obvious ways in which the r-word is offensive. But when it damages us the most is when it is said in ignorance. The facebook status or the teasing of a friend. It is not meant to be offensive, it is not meant to hurt. But even if it is not said with ill intent, it does. It hurts, it destroys.

My daughter is not stupid, ridiculous or inadequate. A word that has been used to mock people with intellectual disabilities makes othesr like my daughter wake up and face a world that has deemed her unworthy and incapable. Incapable because of a word. A word that is not who she is. She is capable, she has gifts, she has talents.

So next time you hear the R-word, next time if you think you might be about to say the R-word. Please stop and think. Think about my daughter, think about others that like her stand strong against the tide of a word that has labeled them in such a negative way, yet they have so much potential. As her family we stand with her, we stand strong, we fight.

Will you stand with us?

Usually, when someone uses the R-word, I take the time to share with people about our family, and what it means to us to hear people using it in such a way. Most do not know how hurtful it is. Some, do not know how to respond, but understand. And just a few, will dare defend themselves claiming that "educated people" use this word, because it is a medical term and some people act in ways similar to those with intellectual disabilities.

I am an educated person. I have a degree in Psychology. Most important, I am involved in the world of special needs. Every. Single. Day.

So allow me to share with you some recent news. A new law has passed where the term mental retardation will no longer be used in the medical or professional community. It has been removed, as the word has evolved and is now used in a derogatory way. The preferred terminology is now "intellectual disability."

You can click here and read the law passed by Congress.

For now, I am thankful that no official documentation will ever have the R-word when referring to Nichole. She is not a retard, not to what this word has come to mean. She is not stupid, ridiculous, or inadequate. She is simply Nichole, a little girl, with many many gifts, talents, and abilities. Some of which, have changed my life.

From Mutterings and Mussings

This beautiful girl you see is Lucy. When Nichole was first born I found a wonderful forum for parents of children with Down syndrome. Lucy, and her mommy Courtney was a member of this forum, and since we both had babies, I really felt a connection with Courtney. I valued that they had journeyed with Down syndrome a little bit longer than we had and ever since then I have been following their family blog.

Just yesterday I got to read Lucy's birth story for the first time! I was surprised at how similar our stories were.

So I wanted to share their story with you, since it is down syndrome awareness month. Happy reading!

The Beginning

It really all started with a phone call in February, though I wouldn’t know that for another five months. The day after my 20 week ultrasound, the obstetrician’s office called to tell me that they thought they saw an echogenic foci on the baby’s heart. They told me this was a “soft sign” for Down syndrome. They asked me to come back in for a Level II ultrasound.

I remember being so scared. I couldn’t get an appointment for five days for the follow-up ultrasound. They were the longest days I had known to that point. I didn’t want to tell many people about this “complication”, but I was really struggling with pretending nothing was wrong. We were in the process of buying a house at that time, and had just put a bid in on a house I loved. Mark came into the room and I was crying. He thought it was because they had accepted someone else’s bid. I had never cared less about a house in my life.

My mom went with me to the ultrasound. “Everything looks perfect.” Sigh of tremendous relief. A few more months of blissful ignorance.

I felt my first contractions on Saturday, June 30…literally just moments after taking care of the final preparations for Lucy’s arrival. In the car after having the carseat inspected, I patted my tummy and said, “ok, Peanut, we’re ready for you now.” She listened.

The labor itself was horrendous. I didn’t know it at the time, but I was having back labor. This fooled me into believing that I was farther along than I really was. Sunday night I made Mark take me to the hospital, convinced this baby was coming any second. They sent me home at 1 cm. I felt foolish and vowed not to go back until I was sure she was on her way. The end result was that in a stubborn snit I waited far too long and my precious daughter was dangerously close to being born on my living room floor.

Mark was at work, so my sister took me to the hospital and stayed in the delivery room for the whole ordeal. I progressed from 5 cm to 9 cm in less than 25 minutes. No epidural. I was sure I was going to die. The consolation was that she came fast. I barely pushed. Mark barely made it in time. From the moment of checking into the hospital until the moment she was born…56 minutes.

They took her to the nursery immediately for observation. I was so disoriented that this did not alarm me. They said it was nothing to worry about, but they wanted to monitor her breathing. They came back quickly and said she was breathing fine, but her temperature was low so they were going to put her in the warmer for a bit. They took me to my room, but we stopped by the nursery so I could hold her for a few minutes. She was gorgeous. She looked like Mark’s Mom, brother, and aunt. I was smitten.

It wasn’t terribly long until they brought her in to the room. Maybe an hour? I was eating and don’t really remember. Life was still too surreal to be keeping track of time. We held her. Took pictures. Sometimes when looking back I feel like something was off, something that I couldn’t put my finger on. But sometimes I think it’s just hindsight.

A few hours after Lucy was born, maybe about 4 or so, I was in my room with Mark and his parents. The pediatrician came in to examine her. She was listening to her heart. For a long time. A really long time. My FIL, not one to beat around the bush, questioned the doc on the intensity of her exam. This pediatrician, whom I had never met before, looked at him and said, “well you know the baby has Down syndrome, right?” (I remember it slightly different. I thought she said, “we think the baby has Down syndrome”, but Mark and his parents agree on the original version so that’s what we’ll go with). Mark responded with “Excuse me?”, to which Dr. Bedside Manner replied with, “Are you the baby’s father?”. I am sure there is a lawsuit in there somewhere, but when it was relevant, I didn’t have any fight left in me. Needless to say, this woman is NOT my pediatrician.

“Well, you know the baby has Down syndrome, right?” No. I didn’t. I had always heard the expression “all the air left the room”. I had never felt it until that moment. It left the room. It left my lungs. It was as if someone had physically punched me in the gut. I was shocked. But given our scare way back in February, I wasn’t necessarily surprised. I wonder sometimes if that made it easier. That little non-warning.

The doctor then preceded to show us all the physical characteristics that lead them to the conclusion that Lucy had Ds. After she left, we preceded to explain them all away. Her almond shaped eyes, well, Mark’s family has almond shaped eyes. The small, low set ears, well, I have really tiny ears and I have always felt they were a little low. The slight curvature of her pinky, well, I have a good friend whose pinkies are slightly curved and she most certainly doesn’t have Down syndrome. We’ll wait for the karotype to come in, but we’re pretty sure they’re mistaken.

But, later that night, when everyone else was gone and it was just me and Lucy, I unswaddled her. I looked at her feet. I could not explain away that gap between her toes. And in my heart I knew, though I wouldn’t admit that I knew until the next day when her new cardiologist told me that she had a heart defect and would require open heart surgery within the first year of life. When he walked out, Mark and I both admitted we didn’t need to wait for the karotype any longer.

When she was two days old, we took her home. Knowing what I know now, about how many babies with Ds spend time in the NICU, I feel tremendously blessed. We took her home, relatively healthy, and began the long process of rebuilding our reality

Friendship

A couple of years ago, one of our MOPS mentors talked to our group about friendships.

There are friends for the road. These are the friends that come into our lives as we travel the different roads of life. These are friends that come and sometimes go, but dear friends as we share significant life stages or life happenings with.

And there are friends of the heart. The friends that are with us forever. Those friends that we have known for a long time, and that even when years have gone by, when we get together, our hearts are still connected.

Two weeks ago I traveled to Mexico for my grandmother's funeral. In my trip, I got to see a few of my friends of the heart. Friends that I have known for a long time, and friends that are so dear to me. Spending time with them makes me realize how much I miss them, and how I wish we could do life together, go out for a cup of coffee or for lunch.
My friend Yuri. We have known each other since we were in sixth grade. We were both moving to the same town and ended up in the same room at our middle school when we were taking our acceptance test. She sat in front of me and we really hit it off. The first day of school, in seventh grade, I ran to see the class list and was relieved that we had been placed in the same class. I waited for her by the door and as soon as she walked in I knew I was not alone.

What a dear friend she has been to me for seventeen years! (I know you are all doing the math, how old am I?)

We shared all the teenage drama, boyfriends, heartaches, family frustrations. We laughed and cried together, and her parents and little brother (now a handsome young man) were like family to me.

I got to see Yuri two times when I was in Mexico, and we talked and talked and talked. She is a beautiful woman and I love her dearly. Amazing how after years of not seeing each other, it did not matter at all. She is still, and will always be, one of my closest friends.

I met Rumi when I was 3 years old. A very long time ago. Our moms were friends, but every morning we greeted each other at school with a frown. Play dates rarely ended well. Then she moved to the US for a few years and came back in third grade. Although I was not a good friend at the beginning, by the end of the year we decided to like each other.

Anyone that knows me, knows Rumi. My friends from college know her, she came to visit. My friends from camp know her, she came and volunteered for a month. On my wedding, she stood by me. And even people from our church know her, as she went on a missions trip to Ensenada to a special needs orphanage to help translate. A life long friend.

Amazing that God, who created us to his image, created us to be relational beings, and He blesses us with friends that we can do life with.

Today, I am thankful for my friends of the heart.

For more on my thoughts on friendship, you can click here and read an article that was published by Christianity Today in MomSense magazine.