31 for 21 FAQ Friday: DID YOU KNOW?

One question that parents with kids with Down syndrome often get asked is: Did you know before they were born that they had Down syndrome?

For us, the short answer is: We knew it was possible, but we didn't know for sure because we declined the amnio.

For a longer explanation, I will repost here the first blog entry I made when I started my previous blog "Megan's Place in the Sun" back in 2008:


Thursday, November 6, 2008
First Blog

Today, November 6th, Gwyneth turns eight months old! I can’t believe how fast the months have gone since her surgery.

Today is also the 1 year anniversary of an ultrasound I had where two things happened: (1) we found out our baby was a girl and (2) the phrase Down syndrome was first mentioned to us. Four days earlier, at 21 weeks pregnant, we had the traditional mid-pregnancy scan that I had looked forward to as one of the highlights of my pregnancy. We wanted to know the sex of our baby but the little being was sitting cross-legged and hid the answer from us! That was Friday morning. Over the weekend we decided we would just wait until the birth to know the gender, and we got kind of excited at the idea of a surprise. On Monday, my doctor’s office called with a different kind of surprise. The nurse said that some things on the scan were concerning, particularly the lungs and kidneys, and I would require a follow-up ultrasound with a perinatalogist. One would be coming from Denver to our local hospital the next day so she made me an appointment. This was the beginning of my denial stage (which lasted until 2 days after my baby was born) in which I believed that the doctors were being overly cautious and my baby was going to be perfectly fine. I think it was simply a defense mechanism as an expectant mom to have blind faith that the baby I was carrying was healthy.

Nevertheless on Tuesday, November 6, 2007, we nervously went to the hospital to see our baby on a scan again with very different emotions than the scan four days earlier. The ultrasound technician couldn’t tell us much except for the sex of the baby, so we decided to find out after all. When she said “it’s a girl” I started to cry; the emotional build-up to that one little piece of information had been incredible. Eventually the perinatalogist came in to explain to us that he saw some potential problems: there was fluid around one of Baby’s lungs that was not draining out, the kidneys might be a little dilated, and the humerus bones were measuring a little shorter than average. He asked if we had done the blood screening tests earlier in the pregnancy to search for birth defects or chromosomal abnormalities; we had not. He said the issues he was seeing on the scan were considered soft markers for Down syndrome but could not diagnose it definitively. He recommended that we do an amniocentesis right then since I was already almost 22 weeks pregnant. I don’t remember if he actually mentioned the words “abortion” or “terminate” but I know that it was implied. He explained that with ultrasound guidance the amnio needle would be inserted in my belly as far from the baby as possible to withdraw some of the amniotic fluid. I asked about the risks of miscarriage which are 1 in 200. We asked if doing the amnio would allow doctors to know anything that could help with improving the health of our baby; he said no.

He left us alone then to decide what we wanted to do. It was an extremely surreal experience. The idea of Down syndrome did not sink in yet, but I was not afraid of it because I had heard enough about DS in the past to form the opinion that people with DS could lead happy and fulfilling lives. I knew I could not give up the little girl that was growing inside me and I started to feel very protective of her. I wanted to protect her against the risk of miscarriage from the amniocentesis. I knew that if I went along with it and lost her then, Down syndrome or no Down syndrome, I wouldn’t have been able to forgive myself for making a decision that put her in harm’s way. So we declined the amnio, telling the perinatalogist that the information wouldn’t change our minds about continuing the pregnancy and we started to talk with him about the future and the health of our baby. We continued to have ultrasound check-ups once a week to watch the problems, especially the fluid around Baby’s lung. At that time, there was never any problem seen with her heart or any other indications of Down syndrome such as the nuchal skin fold marker or shortened femurs.

Within a month, the fluid was gone and our baby seemed to be out of danger. On December 11, 2007 we had our last ultrasound of the pregnancy and confirmed that her lungs looked healthy. The perinatalogist said that there was still a chance that she had Down syndrome and we wouldn’t know until she was born. I doubted that she had DS and asked him what he thought the chances were. He said 10%; I thought “Okay, 90% chance she is normal” without realizing that 1 in 10 is a significant increase from the 1 in 1000 rate for an expectant mother my age. The concerns were pushed to the back of my mind as I entered the 3rd trimester, happy to believe that everything was okay.

Since Gwyneth’s birth I have learned that many people do not receive any indications of DS during pregnancy and are first confronted with the diagnosis when their baby is born. I feel lucky that I did have time to think about the possibility and sort through some of my feelings before her birth. Other parents do find out during pregnancy through amniocentesis (or other invasive tests) and receive a prenatal diagnosis. I was shocked to also learn that of people with an official prenatal diagnosis of Down syndrome, around 90% choose to terminate. I believe women should have the right to choose this option, but it saddens me that this number is so high. I can only think that people must not be aware of how wonderfully children with DS can enrich the lives of their family and others. This has inspired me to become an advocate for Down syndrome and help to educate people on the reality of the condition in today’s world.

31 for 21 This Moment Thursday: BIG YELLOW BUTTERFLY

For "This Moment Thursdays" I want to share a picture or a story from one moment with Gwyneth that happened during the week that I don't want to forget.  There are so many small moments that are amazing that we we experience that will be gone from our memories in the future.  I had the idea for this today, when one of these moments happened and I was lucky enough to capture it with a picture.

I bought a sand & water play table for our back deck and put it together today.  Ryker and I played out there this morning while Gwyneth was at school.  When she comes home from school on the bus, Ryker is always down for a nap so Gwyn and I have some time alone together.  Today I showed her the table and we went out to play.  She loved the water side of the table and kept calling it the "sink."  Right when I took out my camera to take her picture, a big yellow butterfly flew up to us and hovered over the table for a second before fluttering away.  I got a picture of her face just as the butterfly was going away.  The pure joy and excitement on her face is just precious and makes my heart melt.

31 for 21 What If Wednesday: ESPN VIDEO

In the video below from ESPN, the mother of a child with Down syndrome asked herself briefly while pregnant: "What if I aborted her? What if I got rid of her?"

My Wednesday question:  What if everyone could know how wonderful it is to have a child with Down syndrome?  Just like with having any child, every day is not always sunshine and smiles.  There are tantrums and sick days and that's just Life.  But what if everyone knew that having a baby with Down syndrome is NOT a tragedy?
The answer, I think, is that those of us who do have children with DS would be able to skip the "emotional roller-coaster" (as Heath White calls it in the video below) of the initial diagnosis; and the heartbreak and guilt that comes with our first reactions to the news.  Also, I would hope that acceptance of our children from the medical community and society would be much improved!

This amazing video from ESPN details one father's story of reaching acceptance about his daughter having Down syndrome.  Air Force pilot, competitive runner, and FBI agent, Heath White talks about how he was changed by his daughter.  This is the most honest story I've ever heard about a father learning their unborn baby has Down syndrome.  If only he knew then what he knows now.

31 for 21 Therapy Tuesday: FUN AT THE FARM

On Tuesdays, Gwyneth goes to OT and PT at a therapy center called McKenna Farms.  She has been doing hippotherapy and starting to get used to the horses now.  Today was a day of celebration, of course, after her accomplishment yesterday of walking independently.  She showed off her new skill at preschool this morning and at the Farm with her therapists.  I could tell she was having so much fun today, because I could here cheers of "Yay Gwyneth!" and her own little voice saying "Yes!"  She is very proud of herself and soaking up the positive attention she has been getting all day long.

31 for 21 Milestone Monday: FIRST STEPS

October is National Down Syndrome Awareness Month and I have decided to participate again in the 31 for 21 blog challenge.  Many many bloggers are taking part in this month-long challenge to raise awareness of Down syndrome by blogging every day in the month of October.

I was thinking of keeping each weekday to a theme to give myself some structure.  I am VERY happy to say that I've made a last minute change to the Monday theme due to an unexpected MAJOR accomplishment by Gwyneth tonight.  SHE STARTED WALKING.  So I will kick off my 31 for 21 posts with the first "Milestone Monday"....

I have been waiting so so so long for this moment.  Gwyneth is 4 years and 7 months old and today, October 1st, she walked independently.  She walked willingly and happily.  She giggled, she cheered, she beamed with pride.  And I have not been able to stop smiling all night.  I took about a million video clips of her.

A lot of factors in the last few months have come together to make this moment happen.  Gwyneth's baby brother started walking in July (at 18 months old), Gwyn started back at school August 1st where she is exposed to hundreds of walking kids, Gwyn started hippotherapy, and she has been walking with only one hand held for two months.  She has been building up her strength and coordination, and finally she felt stable enough to let go and take her FIRST STEPS on her own.

The best part of tonight was that Gwyneth was having so much fun reaching this milestone.  At first she just took two or three steps for me, but we kept practicing and going further, and by bedtime she was walking ten steps and trying to push herself further.  She tried getting back up to stand in the middle of the floor when she fell (when she has always only used furniture to pull up on to stand).  I have never seen her so motivated to do something physical.  She kept going and going and actually got herself out of breath.

I have a slight guilty feeling that my reaction to her walking is much bigger than when my "typical" son started walking a few months ago.  But I think my reactions and celebrations of each event is in direct proportion to the amount of time I had been dreaming of the moment for each child.  And because Gwyneth was my first child, I always thought I would be experiencing her first steps before I had any other children.  So having another baby when Gwyn was almost 3 years old, and then watching him learn to walk first was a little bit hard.  But I was definitely so proud and so excited for him.  The difference was he learned it on his own, and for Gwyneth it has been an uphill battle with therapy and equipment and orthotics and lots of forced "practice."

So happy for our little girl Gwyneth!  And I can't wait for her therapy sessions tomorrow!