My Story – Part 1

When people find out that my baby has Down Syndrome, I often get asked, “Did you know?”  The answer is no, not really.  I had gone for ultrasound just before Christmas.  We were so excited, we found out we were having another boy and everything looked good.  I remember looking at David and saying, “I can’t believe you couldn’t even give me one girl.”  We weren’t told of anything being wrong.  When I went for my next appointment in January I asked my doctor about the ultrasound.  I told her I didn’t hear anything negative so I’m assuming it’s all good.  She then informed me that there was a white spot on the baby’s heart.  I immediately began thinking the worst.  She told me that this spot is common and can be a marker for Down Syndrome.  She wasn’t that concerned though which is why she didn’t call us.  She sent us to a specialist for a level 2 ultrasound.  He said he had no concerns for Down Syndrome, but he did see a thickening of the wall of the heart and sent us to Children’s Hospital for an echo of my baby’s heart.  After spending an entire afternoon with two pediatric cardiologists, we were told that everything was fine with Patrick and they didn’t need to see us again.  What a relief!!!  I was able to completely put it out of my mind, until  delivery day.

What’s most interesting about my story is that in the midst of all of the worry because of the marker on the heart, I opened up to a group of moms at Ben’s preschool.  I didn’t know most of these women very well yet, but I was frazzled and needing to vent.  One of the other mothers, Kathleen, was also pregnant and she told me they found the same spot on her baby.  The difference was instead of the marker on the heart, her baby had the marker in her brain.  We were both on the same page.  Neither one of us was going to get an amnio because we would keep out babies regardless.  We both felt that with all of the other measurements being normal that we probably didn’t have too much to worry about.  A few months later the email came from Kathleen that her little girl, Emily, had been born.  I was so excited for her!!!  The next day came the email that Emily had some physical characteristics which warranted a chromosome test to determine whether or not she had Down Syndrome.  My heart broke.  I saw her at school the day after she found out the results.  Not only did little Emily have DS, but she also had a congenital heart defect and may have to undergo open heart surgery.  There were no words to say.  Do you say sorry??  She just had a beautiful baby so saying sorry didn’t seem to be appropriate.  I just told her that it was going to be okay.  I sent her some information for programs in our area and made her a dinner.  I had no idea what else to do.  I do remember feeling worried that when my baby was born healthy that Kathleen might be resentful of me.  I was worried she would look at me and my baby and wonder why couldn’t it be her instead of me.

Two weeks later, after a wonderful Easter weekend celebrating with my out of town family, I went into labor.  This was quite surprising because I have never gone into labor before.  All of my other four children were induced.  I had been having contractions all night long and thought something was up.  I called my doctor in the morning and was told to get to the hospital.  David had already left for work, so he had to come home and pick me up.  I was so anxious on the way there.  I was about to have my 5th baby.  I was so nervous I was shaking.  David asked me why I was so nervous right before we got there and all I could say was “What if he has Down Syndrome?”  David just looked at me and said “If he does, we’ll deal with it.”   I was so anxious during the entire labor that I was shaking.  I even asked my nurse for something to calm my nerves.  She just told me I was shaking because I was in labor.  I disagreed, that had never happened to me before.  Nevertheless, I got no help with the anxiety.  When Patrick was born and the doctor held him in front of me, I could see it.  I saw this thick fold on the back of his neck and his eyes were slightly almond shaped.  Other than that, he looked just like my other boys.  But I knew.  After the nurses kept asking David if he looked like my other boys, David knew something was wrong too.  My doctor told me that it warranted a chromosome test to determine whether or not Patrick had Down Syndrome.  I spent the next several hours looking at my baby and falling in love with him.  Both David and I tried to convince ourselves nothing was wrong.  The pediatrician came in and had the same concerns the nurses did.  He did tell us though that there was just a good a chance that PJ was totally normal.  We cried.  That night, around one in the morning, the nurse came in to take a rectal temperature of PJ since he hadn’t been able to maintain a good body temperature yet (another sign of DS.)  She couldn’t find a rectum.  David had already gone home and I was too tired to realize what that meant.  I was nursing him ten minutes later when the pediatrician came back in.  Patrick didn’t have an anus and therefore couldn’t poop or expel any gas.  This called for emergency surgery and he had already contacted Children’s Hospital for the transfer.  He told me that this probably meant he did most definitely have Down Syndrome.  David had already gone home for the night so I had to call him back in to follow our baby down to children’s.  When the transfer team arrived, they brought with them the incubator with every life saving device you could imagine.  I saw it and just broke down crying.  They took my baby from my arms and right before they left, one of the transfer nurses asked me if I got to at least take a picture of my baby.  She said it in such a way that she made me think I might not see him again.  I cried even harder. 

My doctor convinced me to stay in the hospital until the morning because she said that once PJ got to Children’s Hospital he would be taken immediately for tests and I wouldn’t be with him anyways.  She was right.  She released me first thing in the morning and my dad picked me up and drove me down to Children’s to be with my husband and my baby.  The entire drive down all I could think about was that I could handle Down Syndrome, what I couldn’t handle was the current health concern.  I was scared.  When I got to the hospital PJ had just gotten back from the tests.  He was hooked up to so many different monitors.  He had an IV and was on oxygen.  I can tell you this, it is absolutely terrifying to see your baby this way. 

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