The Pregnancy
Our story starts in May of 2002. I got pregnant at 17 years old. I was on birth control, and really didn't expect to get pregnant as my entire family had difficulty conceiving. My pregnancy was normal. Morning sickness and back pain. I moved out in the middle of September a month after my 18th birthday. I believe it was September 18, 2002 when I had the Alpha Fetal Protein test done, or Triple Screen test. I didn't think anything of it. About a week later I went in to the doctor for a bladder infection. My regular doctor who is a VERY close friend was not working so I had to see another one. My regular doctor stayed an hour late to wait for me to tell me the test results. He didn't give me numbers that day, he just told me they were high for Trisomy 21 or Down Syndrome. I was in shock. I was 18 years old, I thought children with Down Syndrome were only born to women over 35!
So when I got home I told Phil and he kind of freaked out. We discussed it. Whether or not we could handle having a special needs child. He was 23, didn't make all the money in the world, and he was worried about the financial aspect of it. But abortion was never an option..and we couldn't bring ourselves to consider adoption. We made an appointment to go in to talk to the doctor and find out just what our chances were. When we went back in he told us that they weren't as high as he had originally thought. That my age related risk was 1 in 1090 and from the triple screen my risk was 1 in 590. I think the first time he might have misread and thought it said 1 in 59. So he put Phil's fears to rest and told us not to lose any sleep over it, not to worry about it. An amniocentisis was out of the question. I wasn't willing to take the risk when it wouldn't change anything anyways. We had scheduled an ultrasound for October 3rd. While in the there technician spent 20 minutes just looking at her heart. After he confirmed she was a girl which I knew all along. He said he didn't see any markers for Down Syndrome and that he didn't think the baby had the extra chromosome. After that I pretty much put my fears to rest and just got anxious to meet our little girl.
My due date was February 24, 2003 going from the ultrasound. I knew she would be a little early for some reason. Her name was picked out as soon as we knew she was a girl. Alicia Heidi Marie. Ali for short. Alicia is a name Phil liked, and both our Grandmothers were named Alice. Mine passed away right before I conceived Ali, so I wanted to name her after her. Heidi is Phil's sister, and Marie is his Mom's middle name along with my close friend Anna's middle name. We told his parents right before Christmas, we wanted to wait until we were sure everything was ok because we knew how excited they would be. About two weeks before I delivered I started doing research on Down Syndrome, just in case. Ways to tell at birth, things like that. I found a wonderful message board and posted some questions there. I'm still at that board today. I still to this day have no idea what prompted me to find that board, but I am so thankful I did.
The Birth
Now this is kind of funny...we went and ate at Olive Garden on Friday January 31, 2003...and I ended up going into labor on Saturday February 1, and going to the hospital. They sent me home because I hadn't dilated anymore. So I waited hoping I would go into labor again. Finally on Tuesday February 4, I decided I was done waiting and notified Phil we were going back to Olive Garden. We did, and I woke up on the 5th with contractions again. I was hesitant to rush to the hospital, so I didn't. I told Phil as he was leaving for work to make sure he had his phone on him because I thought today would be the day. He left at 9am, my water broke at 11am. When he got home a few minutes later we headed to the hospital. I was at a 4, and 80% effaced. They waited to see if I would dilate and I didn't. They started the pitocin at 1pm. The contractions were getting really bad and very painful. I was not relaxing, and not dilating. They told me they would have to give me an epidural (I had wanted to go natural) in order for me to relax to dilate. They gave me that at 4pm. They didn't check me again until 4:30, and I was ready to push.
They had me do a couple of test pushes while the doctor was on his way, everytime I pushed Ali's heart rate would drop. I was scared and refused to push until our doctor got there. When he walked in he laughed because I had told him that this baby was going to be here before my next appointment and he didn't believe me. He came over and had me push once, and her heart rate dropped. I looked at him, and he looked at me. He told me I had to get her out or I'd end up with a c-section. I said ok and pushed when he told me to. 6 pushes and she was out. At 4:53pm.
They put her on my stomach but I couldn't really see her. Then after they moved her and I actually got a good look at her, I knew instantly. There was absolutely no doubt in my mind that she had Down Syndrome the second I saw her. I was sure someone would comment soon. But as I looked around I realize I was the only one who noticed. I had no clue what to do then. Say something, or keep my mouth shut? I chose to keep my mouth shut. She was perfectly healthy as far as everyone could tell, 6lbs 15oz, 18.5 inches long with apgars of 8 and 9.
Everyone was oohing and aahing over her. My Dad and brother came in, along with my Mom. And Phil and I were in there. The doctor had left simply telling me I had a healthy baby, I wanted to scream at him to take his blinders off but I just nodded. He would be back in the morning, we would see about asking him then. For now I just wanted everyone to be able to excited about Ali without having to tell them she had Down Syndrome.
Up Until The Diagnosis
Phil noticed something weird a few hours after she was born. He asked the nurses if the doctor would have said something, and they said he probably would. Everyone kind of avoided the question. Ali's only problem was holding her body temperature. I didn't sleep that first night. I spent all night up holding Ali. I was just in shock I think. The doctor came in that morning and Phil asked him about Down Syndrome. I knew immediatly he didn't want to believe it when he said, "You're crazy and paranoid, you have a healthy and beautiful baby daughter, just enjoy her." I told him I didn't believe it but that if he wanted to that was fine. He came back around Noon and I knew he had changed his mind. He said, "You know, I'm starting to rethink here. A couple of doctors have commented to me that I 'delivered a downs baby'. You know, she does have some of the characteristics, she just doesn't look like most kids with Down Syndrome I've seen. I'm starting to think that maybe I have my blinders on because of our friendship. So I'm going to go ahead and do the test, and we'll see what that says." That was when Phil kind of realized it was serious, and let his parents know. My parents already knew but it didn't make a bit of difference to them either way.
We left after two nights in the hospital. The doctor came in the morning we left and said, "You know, the more I look at your daughter the more I see features of Down Syndrome. I still just don't think she has it, I'm so torn. I am going to overstep my doctor's bounds here for a minute though and say this much. If she does have Down Syndrome then God sure picked a great set of parents for her. He knows what he is doing." I almost cried, that meant so much coming from him. We left, and started quite a hectic few days. I spent the next week trying to prepare everybody for the fact that Ali had Down Syndrome. Everyone else was in denial. My in laws were really in denial. I was most worried about their reaction. My parents were in denial but I knew it wouldn't make a difference anyway. I was extremely worried about Phil...I tried so hard to prepare everyone.
We had an appointment on Friday the 14th to go to the doctor anyways. I called on the 13th to find out if they had test results yet. The nurse put me on hold and told me the doctor wanted to talk to me. Deep down I knew that was because she had the extra chromosome. But a part of me wanted to believe that he was going to come on and say, "I told you so." He didn't. He came on and said, "I can't believe it but she does have the extra 21st chromosome." He apologized, and told me he really didn't think she did.
I cried for about 5 minutes. Phil didn't get off work for another 2 hours, and I wasn't about to tell him on the phone or online. I waited for Phil to get home. I was a nervous wreck. I couldn't figure out how to tell him. I finally did and he broke down. He called his Mom and she asked if we were sure, if the test could be wrong, ect.. She called his Dad and he called us. I called my Dad and told him and he said, "So what, it doesn't make a difference." Those first few days were hard, but it went steadily uphill after that. Ali is just so much fun that you can't help but love her. If I had known then what I know now there never would have been tears! I thought when she was born with Down Syndrome that all my dreams were shattered, but I couldn't have been more wrong.
After Diagnosis
Ali was diagnosed with a PDA at 8 weeks. That is the hole in your heart that is supposed to close right after birth and hers didn't. We closed that at 14 months, which was a very minor procedure. She inherited my asthma and awful immune system so we have had a few problems with being sick...but she has been HAPPY through it all! This is the happiest child I have EVER seen. No matter how sick she is she will still smile! She has slept through the night since she was born, and never stops smiling and laughing.
As for thinking that I would need lower expectations for her I was very wrong. We set goals for her at 6 months, for her to meet by 1 year. The therapists told me I was expecting too much of her...yet she met every single goal we had set! She started sitting up by herself around 7 months...and started using a roll and pivot system to get around. She got her first tooth the day before her little sister was born when she was 10 months old. She got her second tooth about a month later...and started crawling right after her first birthday. Then she was pulling up to everything, cruising the furniture, and getting into everything! She even figured out how to work the VCR so she can watch her video when SHE wants to watch it! Now at 18 months she is using a reverse walker to walk around a lot of the time. She feeds herself, drinks from a cup and straw, and get into everything.
My daughter is the light of my life and I don't know what I would do without her. I don't really see the fact that she has Down Syndrome anymore. I know she does, but that's ok. My life with Ali is just like I expected it to be with a "typical" child, except it's much easier with such a happy baby! She has such an incredible personality that everyone just loves her. She's amazing, and her extra chromosome just makes her more special.
Feel free to email me for anything: [email protected]
"It's true that Down Syndrome sets them apart,
But God gave them grace to capture our hearts."
To learn more about Down Syndrome go here: Www.Trisomy21Online.com
