Monday, July 27, 2009

Pregnancy of a Down's syndrome child

August 17, 2008 we went to Rapid City SD to Reptile Gardens. Our 2 year old son is a fanatic about everything nature! My husband and I discussed throughout out the day/year about having another child. I just could not believe how perfect Max is, so beautiful, so smart, so funny, such a huge personality. When we got home there was a perfect ending to our day. We put our perfect son to bed and well one thing lead to another and a baby was conceived. I knew immediately I was pregnant. I knew we were ready; I had prepared my body I stopped taking the pill a year and half before, I was taking folic acid, I was exercising regularly, I was eating as much hormone free foods as possible, I limited all caffeine and never drank alcohol. So I bought an economy sized pregnancy test pack and began testing; the test was POSITIVE! Of course I am one of these people that has to take multiple tests to be sure all 15 were positive! I was pregnant with another perfect person and I was so excited but very scared more scared then my first pregnancy. I told my husband that we were pregnant and he hugged and kissed me with love, joy and excitement! We choose not to tell anyone without confirmation from the doctor. I made my appointment with the doctor and it was official I was pregnant. At 8 weeks pregnant I had my first ultra sound. I remember the doctor saying this is a strong heart beat you have nothing to worry about. I hung on to those words for months how strong the heart was beating. I went in for normal check ups and everything was normal no sick, no worries, just anticipating the babies first movements.

It was time for a routine 5 month ultra sound it was in January 2009 and we decided to take our 3 year old to meet his new sibling. It was an experience! He stole the show with his comments and enthusiasm he had everyone in the room laughing. We did not want to know the sex of the baby we loved the surprise. At the end the doctor lightly mentioned that she did not see a stomach bubble and would like to do another ultra sound in a month. Both my husband and I did not think much about this. I mentioned this to friends and they reassured me that if she is looking in a month it must be nothing to worry about. I did no research during this time which is unlike me but I just did not think it was a big deal. The ultra sound day came February 17, 2009 I told my husband not to come that it was nothing and that there was no worries besides I was feeling the baby move and it was very reassuring. In the waiting room I remember getting really excited that they had a 3-D ultra sound machine I really wanted those pictures. I joked with the nurse then the doctor and laughed at my son and how much of a personality my son is. As I lay on the table we went through all the anatomy of the baby her assuring me things looked good and the doctor got quiet and she changed her tone and her conversation to me. She started frantically going to the heart, to the brain, measuring the bones and talking in medical terminology. I froze and I knew then something was wrong with my perfect baby. I tried to hide the tears and be strong but it was impossible. All I remember about her comments are no stomach bubble, Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA), Down's Syndrome and when is it good for you to go to Denver to see specialists. As I cried she hugged me, the nurse hugged me and the office people could not look me in the eye. It was the worst day, the saddest day so I thought. I called my husband and I was a mess I could not get to the Internet fast enough to learn about everything that was just being said me. I could not believe that my little baby was going to be possibly born without an attached Esophagus. How would she eat or how will she survive. My husband called the doctor to get more details and she assured him like she did me that the risk for Down's Syndrome is very low and that we needed to see the specialists to see about the TEF/EA that this is a very rare occurrence 1 in 4,000 live births. So we made the appointment for the following week.

We went to Denver as a family during this time I could not let go of my 3 year old son it was like I had to keep him close to protect him from what was growing inside me. On February 21, 2009 we saw the specialist and still there was no bubble in the stomach. Then the doctor said to us he would like to do an amniocentesis to rule out Down’s syndrome. He only gave us a 20 percent chance of having a Down’s syndrome child. I was reeling I could not believe what was going on it was like I detached that day from the baby growing inside me. The doctor said we will see you in a month to be drained of amniotic fluid because the baby could not swallow he explained that I would fill up with amniotic fluid dangerous levels that could put me in to preterm labor this is technically called polyhydraimnios. Again I did not realize the challenge with the baby not being able to swallow there own pee how huge I would get, how uncomfortable I was looking 9 months pregnant and I was about 28 weeks. Also, during our next visit we were to visit with the pediatric surgeon.

On February 23, 2009 2:10 pm it was confirmed I was carrying a child with trisomy 21; Down’s syndrome and asked if I would like to terminate the pregnancy. 92% of child diagnosed with Down’s syndrome are terminated. All I could do was ask if the baby was a boy or a girl I needed to know this information. It was girl he said. I threw myself on the ground I was hysterical and alone how was I going to tell my husband this terrible news. The moment I stopped touching my belly I wanted nothing more to do with this pregnancy or this baby. My husband got home from work and I told him the news. I cried so hard I thought I was dying. I think something in me that day did die I buried the notion that I was having a perfect child a perfect little girl. I could not picture this baby as a little girl; a baby I pictured her as a teenager or an adult. I grieved that I was never going to plan a wedding with my little girl, that I could never relate to her emotionally or socially, that she would never be the little girl that I expected or wanted. I did not want this thing growing inside me. I hated her. I hated myself for feeling this way. I could not believe my own reaction to the diagnoses. I thought I was stronger then this, better then this, I thought I was open minded a free spirit that I was up to anything. I am a glass half full personality. Then I turned my grief to my son; what had I done to him how and why does he have to live with a special needs person and have attention always going to his sister instead of to him. To be referred to as the boy that has the Down’s syndrome sister. I was just sad and there was no going back.

I did think about terminating this pregnancy I thought long and hard about this. It was crazy how I did not think my husband should really have an opinion on this topic. I really thought that this was my decision to make and solely mine. As it got harder to make this decision of course I wanted his feedback I was sure he would say lets get rid of this baby it is just too much for all of us. To my surprise and dismay my husband was fine with this news. He took about 24 hours and then bounced back and could not wait for the challenge of this little girl he was excited. During this time the little girl growing inside me was very active. I mean she was so active I felt like she was beating me up, she was actually hurting me she was already feisty! I realized that she was speaking to me she was trying to tell me that I am alive and you are MY MOM so either rise up to the challenge or get the fuck out of my way because I am coming no matter what.
All the while I was sick of people telling me that it would be fine, that she was coming to special parents, or the “right parents” you see I am a daycare provider and my husband is a teacher. I guess that meant that we were up to this challenge. I beg to differ on this. Everyone just kept on saying Down’s syndrome children are nice and sweet and always happy. Like that was supposed to make me feel better that she would be living with me forever. I even had people say well at least your child is alive and not dead or that you did not loose her in miscarriage. Really that is the best they can do I hated all those comments. The worst comment was probably when a lady who I did not know said congratulations on having a child with Down’s syndrome. I came unglued with this comment it was one of the most insensitive comments I have ever heard. I remember discussing the hard decision of if I should continue with the pregnancy and my friend being revolted by notion of abortion. She actually said you would never do that; that is awful I told her not to comment on this until she was pregnant and had the news that she was having a Down’s syndrome baby. For a month at least I was in a deep depression and angry about the situation that I had put my family in. I refused all help and refused to have a baby shower. The results from the amino and blood work confirmed that my husband and I were at no greater risk to produce a Down’s syndrome child than any other couple at our age. When I went to the doctor I wanted to tell every pregnant person in the waiting room that they had no worries on having a Down’s syndrome child because I was the statistic 1 in 733.

I went in to preterm labor at 30 weeks it sucked they gave me shots and was put on medicine to stop the contractions. The medicine made me thirsty, nausea, and very shaky and will be on them for the duration of the pregnancy. But in the hospital that night I realized how much I wanted my baby that this was my little girl. I remember screaming at the nurse that if she shoves that thing up my vagina much further and ruptures my water my baby will die so to get another nurse. That was the first time since hearing all the news that I referred to her as my baby, my little girl. I wanted her and I wanted her to live. That day I touch my belly and started to massage her and love her like she was mine. She is mine and her name is Maddox (Maddie) Rose and she is my perfect little girl.

I read about all things Down’s syndrome and saw I was completely wrong on all my views and assumptions of children with Down’s syndrome. In the meantime we went to Denver for our second visit I was drained of amniotic fluid 2 liters. It hurt but it felt good afterward I was as big a 37 week pregnant person instead of being just 30 weeks. We also met with the pediatric surgeon. She is a young aspiring surgeon only 5 years experience pretty new but has great doctors to learn and mentor from in her practice and will be only assisting on the surgery. Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA) was explained to us and did not sound as daunting as everything I had read on the internet. She said if this is the only this wrong with our little girl she will have a smooth recovery. She explained how the surgery would be done with a scope, that only 2 places in the United States perform this surgery with a scope. We feel very confident with our little girl’s surgeons. Of course we are hoping for a TEF Fistula (obstruction) instead of a full EA Atresia (Open gap between stomach and esophagus). The hardest part of the TEF/EA is the unknown of what she has fully until she is born. She will have a series of test done a VACTERL which stands for V-vertebral, A-anal imperforate, C-cardiac, T-teteflea, R-renal (kidney), L-limb to determine everything that needs to be fixed. TEF/EA will be determined by a simple x-ray. Then she will have surgery within the first few days of life to hopefully correct the TEF/EA. She will suffer from severe indigestion or acid reflux for most of her life that will be helped with medication. With Down’s syndrome children a heart defect is a big concern we are hoping for the best, her heart has always been strong. A huge thing for me was she may not have a butt hole. I know this is crazy but I was freaked out about this. The doctor explained this is a simple surgery and has a very good success rate.

Some good and surprising news is that I will be able to breast feed with a pump and after surgery hopefully I will get her to latch on. After that visit with all the doctors it was four hours later and we were ready to go home. Both of us were encouraged with the news of little Maddie and that she was gaining weight and as perfect as could be! Of course there was a snow storm in March that stuck us in Cheyenne for another 24 hours. It was par for the course!

I did not realize after that trip to Denver my life would be filled with Doctors visits. I see the doctor 2 times a week for an ultra sound and NST non-stress tests. By now I am sick of ultra sounds and the pictures that come with them. I do have to admit the 3-D and 4-D ultrasounds rock and I have seen my little girl and she is the most beautiful little girl I have ever seen.
I knew I had gotten full of fluid again the contractions were coming stronger and more often. The Doctor told me I had to be drained within 7 days! So off I went to Denver to get drained. And another April snow storm! They took 2 more liters off me. This time it hurt and I was tired; very tired and sore. There was not much relief and I was contracting pretty hard and consistently after the procedure. Again I got shots to stop the contractions. But there was the best news of all! My little Maddie had a partial bubble in her tummy. Something we have never seen before. I can not tell you the joy and excitement; it is the best bubble I have ever seen. It still means she has TEF/EA but at least there is hope for TEF. During this visit she was tested for lung development of course it was not good news. We have gotten used to this. She scored a 31 she needed to be above a 55. The doctors assured me that this is miner and that she will most likely just need a ventilator.

I am continually monitored twice a week but there is an end in sight I will deliver May 13, 2009 in Denver. I am so excited and nervous and scared shitless! I finally bought her a blanket and some clothes. I prepared her bed and have a car seat. I am ready for her and I am up to the challenge of being her mom. I have specialists coming in once a week to work with her until she is 3 years old, then she will attend their preschool and then she will be placed in main stream public school. I know that early intervention is best for child with Down’s syndrome. I am doing everything I can to make sure she has the best. I will continue my in home day care for her stimulation and development.

I am at a good place emotionally however; I have good and bad days and then really bad days! I have experienced people’s ignorance and prejudice towards my child and she is not even here yet. I know I need to remember you cannot fix stupid and that is what we are if we do not try to understand the unknown of being a parent of a child with Down’s syndrome.

1 comment:

  1. Holy crap, I can't believe I never saw this post before. This is the best most honest and gripping prebirth story I have read. I remember feeling so much the same way with my pregnancy, and you really captured the reality of it all.

    And then years later we look at our beautiful girls and think, WTH was I all knotted up about?

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