Posted by on Sep 30, 2013 in Our Kiids | 0 comments

2008 had been a difficult year for us.  We had a baby in the second trimester followed soon after by an early miscarriage. After numerous doctor visits to confirm I was healthy, we found the courage to try again.

Unlike my first 3 pregnancies, it took us quite a while to get pregnant.  But finally in February of 2009, the test was positive- we did it! We were anxious, but excited.

Things progressed normally.  My OBGYN offered a new screening.  Sure, why not. I’m sure everything will be fine.  We had been through so much already, and the testing would provide us with a bunch of extra ultrasound pictures.

The first ultrasound would be in the first trimester.  How exciting! They took all the necessary pictures and measurements.  They had me wait in the consultation room where I met with the Antenatal doctor. I was confident everything would be okay, but it wasn’t.  The doctor was concerned about an elevated nuchal translucency.  Apparently, it was significant.  Although I got him to admit it could resolve and be nothing, this measurement was often indicative of one of the trisomy syndromes.  It had to be nothing!  He tried to schedule a chorionic-villi test of the chromosomes, but I refused.  There was no way I was going to risk this miracle baby for my piece of mind.  I would continue with the screenings until a major problem presented, but until that time I would try to continue with the pregnancy as though everything was fine.

Each ultrasound got better- the fluid was absorbing, but there was still more than there should be.  Thankfully some good news- the heart was normal.  Different subtle red flags would pop up- like mild hydronephrosis and a small choroid plexus cyst- all normal variants, but grouped together made the doctor suspicious. But they would disappear by the next ultrasound.  Once or twice the doctor said, “This kid looks great!” He would be cautiously optimistic baffled by my refusal for an amniocentesis to end the mystery.

At 16 weeks, we knew for sure it was a boy.  I had so many ultrasound pictures that it was clear even to me without the techs announcement.  It would have been a fabulous pregnancy without the cloud of doom that hung over every appointment.  Sometimes I would wake from nightmares about looking at the ultrasound screen and seeing terrible things.  At home, I was very anxious- prompting the baby to kick every time I noticed he had fallen quiet.  I even bought a Doppler so that I could hear his heartbeat before I went to sleep at night.  We were all so excited, but so scared.

We fought over names for months.  I had settled on the name Logan from the movie Wolverine.  My husband didn’t like it as much, but I would persuade him.  We readied the nursery- classic Winnie the Pooh would be perfect.

I worked as a Neonatal ICU nurse.  I had seen babies with all kinds of diagnoses including all of the trisomies which added a whole new dimension to my fear.  I worked until a few days before my due date.  It wouldn’t be long until my scheduled repeat C-section on October 14th.  Recent visits to my OBGYN would show my cervix was determined to stay closed- as it did for my first child- but I had the feeling my doctor might consider letting my deliver vaginally anyway.

Around noon on October 14, 2009, I was admitted for my C-section.  My doctor came in and together we decided to give the VBAC a try.  So, the long induction began.  I was determined to do this despite my husband’s impatience.  It was a very slow process, but in the early hours of the 15th, we were making progress.  Shortly after 7AM, I began to push.  At 8:02AM, with one last push a fat healthy baby boy came into the world and into my arms- a TRUE MIRACLE! Logan Edward was finally here.

We recovered quickly and finally got some time to spend as a new family of 4.  Family and friends came to visit, but nobody noticed what I did.  This child didn’t look like my first- at all. Maybe I was just being paranoid.  Numerous doctors and nurses have seen him- even the pediatrician- and nobody said anything.  Despite some newborn jaundice treated with a day of phototherapy, he was given a clean bill of health and discharged.  Everything was fine except for that pit in my stomach when I held him in my arms.  I would just stare at him for hours. Something wasn’t right.  My husband just kept assuring me he was fine.

At one week of life, we had our first visit to the pediatrician- not the same one who examined him in the newborn nursery. The exam was going well until I commented on how different the baby looked from my first child.  She confirmed my suspicions- that Logan had Down Syndrome.  Other than a few physical features, he was perfectly normal and healthy.  His muscle tone was great, he fed well and his heart was fine.  I told her I didn’t want to know.  I would raise him just like I did my first and if there was problem I would deal with it then.  She reluctantly agreed, but she would follow up with us in a month.

When Logan was 6 weeks old, I returned to work in the NICU.  Everyone oooh’d and ahhh’d over the pictures. I sat down with one of the Neonatologists, who happen to be married to my Pediatrician.  I told him what had been going with Logan. He had seen many of the photos I had taken.  He said that he too suspected that Logan had Down Syndrome.  His almond shaped eyes and the space between his first and second toe were an obvious sign to him.  He said although Logan was healthy and thriving, there were other health problems we needed ruled out- things that weren’t so obvious like thyroid problems and cardiac issues.  I finally realized the denial I had and realized that my refusal to act could harm my precious baby.

That week, I brought Logan to the hospital for bloodwork.  We waited about a week for the results. Every time the phone rang I would cringe.  Shortly before Christmas 2009, the phone call came.  “Mrs. Compton, we have your results.  Your son has Trisomy 21.  I’m sorry.”  Although not unexpected, the news was still shocking.  Sobbing uncontrollably, I gave my husband the news.  “He’s fine,“ he kept saying, “he’s fine…”

After the shock has passed, I needed to figure out the next step.  That brought my anxiety to a whole new level.  There is NO WAY I can do this.  It wasn’t the fact that my child had special needs- it was that I was his mom.  What rotten luck he had to get stuck with me.  I can barely organize my shopping list, and now I have to plan visits with specialists and therapists and what ever happens to crop up.  People always tell me God only gives you what you can handle or God chose you for him, but he must have messed up this time because there is no way I can give him what he needs.  But I have never been so wrong.

I am amazed by the support that started coming in- friends who knew someone who had a child with Down Syndrome and social workers. Strangers would reach out to me and assure me that I WOULD measure up.  They would tell me I was a good mother and I would be able to do what needed to be done.  They told me to take a deep breath and everything would be okay.  So I rolled up my sleeves and jumped in with both feet.  It hasn’t always been easy, but I think I did pretty well.  Most importantly he has thrived.  He is a happy healthy preschooler who happens to have Down Syndrome.  He has not only brought out he best in me, but he makes an impression on everyone.  His extraordinary big brother Jack has embraced, nurtured and protected him- and Jack’s peers at school have rallied around him. He brings a smile to everyone he meets and lights up every room he walks in to. I can’t imagine our family without him.

I really believe that the Down Syndrome community is the best club you never wanted to be a part of.  The support is overwhelming and the opportunities for fun and fellowship are tremendous.  I believe he has helped me grow and has shown my family and friends the new face of Down Syndrome and that although he may have special needs there is nothing disabled about him.  And I think he is here with me for a reason.  Through my experience, I get to touch other families and share my story and what I have learned as they start a life touched by Down Syndrome.  It’s not always sunshine and daisies- sometimes I get sad thinking about the difficulties he may face in this world.  But I’m glad he’s here and I think the world is a better place with him in it.