Heidi's Story

Being a young 20 year-old mother and expecting our first child, I was excited about the potentials of what being a mother was going to be like. We had fun knowing that we were expecting a little girl, and we started choosing out things that the babies room was going to be like. We picked out the crib, baby blankets, clothes, shoes, etc.

We went to the prenatal classes, where, we learned about the stages of labor, babies development during pregnancy, strategies to relieve pain, etc. and were just so delighted from the friends that we made there. We were also impressed about how well the educator knew, and what ideas and impressions that she made as we were learning about becoming parents.

As our pregnancy went along, we were asked the question whether or not we wanted an amniocentesis done to test for Down syndrome, spinabifida,etc. Thinking nothing of it, I said I didn't want them sticking a needle in by belly, and that I would love the child regardless.

I went into labor on a Sunday afternoon at 2 p.m., and it being our first pregnancy, didn't know that I was in labor. After being in pain for so long, I told my husband Justin that I wanted to go to the womens center at the hospital that I would have the baby at and get checked out. When I got there, they stated that I was dialated to a 6, and that the baby was currently in the breech position (I know this because her head was right under my rib cage and I couldn't breathe!) and that we had only a few minutes to get her out because she was starting to breath wrong and that she could start going into stress. They did an emergency C-section and had her out within 7-10 minutes.

When Heidi came out, she was so beautiful. I saw my husband hold her for the first time and she looked so frail and breakable in his strong muscular arms.

They whisked her away because she wasn't getting enough oxygen. (She needed oxygen the first two weeks of her life.) They never took her to the NICU, but had her under constant watch and care.

A few minutes after her being born, (I was being stitched up), the social worker came in and requested that she talk to us. At first I was alarmed. What could she possibly want to tell us about our baby? What was wrong with the baby? A lot of thoughts ran through my head all at once. Thinking the worst, I didn't know what to expect. I first thought that my tiny daughter, who weighed 5 lbs. 15 oz. and who was 20 inces long had stopped breathing.

We were both told at the same time that she was showing signs of having Down syndrome. At first I was shocked at the idea, but having a cousin with Down syndrome lessened my fears because I had been exposed to it a little throughout my life. What I was worried about was what my husband was thinking. I have to say that the emotions the first two weeks of having our beautiful daughter was unexplainable, even so that I cannot write it down on paper.

At first I thought that I had done something wrong. I was wrong. I thought it also very strange that I was so young to have a baby with Down syndrome. I mean....didn't that only happen to women who had babies when they were a little bit older? Apparently not.

Justin and I went to genetic counselors, where we learned the genetics and what had happened during the development of our daughter when the genes were split.

We were introduced to Early Intervention and the Social Security Administration, and the Disability Services. All of these things came available to our daughter, who at first, I thought I didn't know how to help.

But through loving family members and friends, we were loved and we knew that our daughter was loved. We have been through so much with our daughter Heidi.

Heidi had surgery at Primary Children's Medical Center in Salt Lake City, UT where she had three holes in her heart which were repaired through open heart surgery, a PDO, PDA, and VSD. She still has mild pulmonary hypertension, and we take her in every year to make sure that everything is okay. She had double aspirating pneumonia for sixteen days in March and April 2008 and shortly while we where there she was diagnosed with dysphagia, a swallowing disorder in which she cannot swallow regular thin liquids like regular milk or juices. We thicken her liquids as part of her special diet.

Heidi has brought so much love and affection to our family. She also has brought us great joy, insight, and peace into our lives.

You can learn more about our family by visiting www.justinandkaren.blogspot.com

Ethan's Story

I was 32 weeks along when my OB realized I was measuring small, so he did an ultrasound and saw what he thought was some extra fluid in my babies stomach. This was on a Friday afternoon. He said, "I don't mean to alarm you, because this could be nothing, but I think you should see a perinatologist first thing Monday morning." Of course, we were alarmed! Monday morning came and the perinatologist found much more than extra fluid in his stomach. It turned out to be a bowel obstruction, two heart defects, and many other "red flags" for Down syndrome. The next day we went back for more testing and an amniocentesis. We had to wait for the results of the amnio until Friday the 13th of May. That was the longest week of my life! The unknown was so difficult for me! My husband was so sweet, he looked on the internet and said he had seen pictures of kids with Down syndrome and that they were so cute. Unfortunately, at that time that was the last thing I wanted to see. I pushed reality away for awhile. When Ethan was born I was honestly surprised when he came out looking like a perfect little boy, he looked a lot like his big brother! I think subconsciously I was expecting a little monster!
What a journey we have had since that wonderful day! I have learned and grown so much over these past few years so has my husband, our kids, our families, and so has Ethan. He is a joy to be around. He has a gift of bringing out the best in people. Everyone loves him and I am privileged to feel that love as well. We are often the recipients of random acts of kindness, genuine smiles and laughs from total strangers, the ability to instantly become friends with others in similar situations, etc. The list could go on and on. I will be honest, all this growing has brought about some growing pains, but I honestly can say I would never change it. I feel a greater sense of meaning and purpose in my life especially as I care for Ethan and my other children. While I am being honest I will admit that though Ethan came to this world looking perfect and angelic, he does has a little monster in him! I rejoice in it, because in so many ways, he is so normal! What three year old isn't a monster sometimes? I look forward to continuing this exciting journey in the world of Down syndrome. Ethan is full of surprises and so much love.