Caleb’s Story- Down Syndrome Diagnosis After Birth

Caleb was a surprise all the way around.  Going back late summer 2006, when I hadn’t been feeling quite right.  “I think I’ll buy a pregnancy test”, I said to David, my husband.  He outright laughed.  We had been told by my OB that I was really not able to get pregnant.   Our daughter was 17 years old, and looking at graduating soon and going off to college.

The next day, I sat in the bathroom, stunned.

The lines were pink…but,  that wasn’t right?  I took the other test, and that one was pink too.

I staggered out to the living room and whispered to David “we’re pregnant”.  I’m pretty sure he turned pale at that point.  The rest of the night was pretty quiet.  I think our daughter thought we were mad at each other lol.  About a week later, my doctor confirmed the news, and we let Courtney and the rest of our family know.  While most of our friends were sending their kids off to college (heck, we were too), we were also prepping a baby room.

Our pregnancy was pretty normal, and uneventful, for two old people (!).  I was 44 and David, 50.  I kept running, and worked to be in the best shape I could be to deliver naturally.  At our ages, we were referred to a “high risk” doctor, in addition to our regular OB.  There, they prepared us for different scenarios, including a room with pictures of children with different genetic anomalies.

I sat, looking around, and felt sorry for parents who had to deal with “that”.  Poor people.  How sad.

About halfway through our pregnancy, we had a nuchal scan, and maternal bloodwork done.  My risk for having a child with Down syndrome, already high at 1/33 due to my age, increased to 1/25.  “Options” were presented, and although not pushed, it was still pretty clear that many people chose to end the pregnancy at this point.

We took it all in, went home and talked about it, and decided that we didn’t think it could happen to us, and put it out of our minds.  We declined the amniocentesis. Monthly ultrasounds showed nothing out of the ordinary,  but we did get to see Caleb quite a bit (and found out he was a Caleb, not a Caitlyn).  Months moved along.

Soon, I was 8 months pregnant.  My easy pregnancy began to have some issues with high BP, and I was hospitalized for possible pre-eclampsia.   We were starting to get excited to meet our little boy.   I was released from the hospital, only to go back in the following week, after his amniotic fluid had leaked (ultrasound finding).

Today’s his birth-day!  I called our daughter, still in class, to let her know.  He was a month early.  His delivery would be a c-section, as he was breech, but I didn’t care at that point.  I just wanted to have him in my arms. Looking back though, I never pictured in my mind what he might look like.  I never had any preconceived ideas of what he might be like, or what he might grow up to be.

I remember when the Dr. announced he “was out!”  I waited for the cry.  It seemed like minutes before I heard his faint squeal.  The room seemed very quiet.  I really didn’t know what to expect though, as Courtney was delivered naturally.  I wondered about his weight, being so early.   Later, in recovery, I struggled to get him to take a bottle.  In my morphine-induced fog, I complained to the nurse.  She was quiet, and asked if I’d like her to feed him.  I was exhausted, and just happy to get some rest.

I woke up the next day in my room.  David was by my side, tears in his eyes.  “They think he’s Downs”, he said, fighting off sobs.  Huh.  I didn’t understand.  What?  He said, “The NICU nurse says he has Down syndrome.”  Wow.  OK.  I tried to think. This wasn’t how it was supposed to be…or was it?  I had a sense of calm wash over me.  It would be OK.  No matter what, he was ours.  They couldn’t take him away from us.

I wanted to run away from the hospital, and just leave all the news behind.

That first day was a blur.

A thousand different emotions floated through me.

Happiness that our little guy was here.

Sadness, because I had no idea what a life with Down syndrome meant, or what I needed to do about it.

Sore (I had a c-section!).  Confused, overwhelmed, stunned.

Family and friends floated in and out of our room all day.  David and I had not mentioned it yet; we took turns looking to see if anyone noticed anything different.  He was having a hard time feeding, so spent much of the time in the NICU.  The next day, the Dr. let me know I would be released, but Caleb would have to stay until he could eat properly.

Another punch in the stomach.  This was all so unfair.

He gave us the book “Babies with Down Syndrome”, and his thoughts about what we should expect.  It didn’t register to me.  Nurses came and went, not saying much; certainly no congratulations.

Finally, a sweet nurse popped her head in and asked to talk with us.  She showed us a photo of a beautiful baby boy-big blue eyes, a shock of red hair, and… Down syndrome.  She was fostered him, and let us know everything would be OK.  Things might move a little slower going forward, but Caleb would certainly have a future.  She was our angel we had been waiting for.  We are still friends with her today, and still know that little baby, “T”, who was eventually adopted by another family.

During trips back and forth to the hospital, I scoured the book we’d been given.  It seemed very technical to me.  I just wanted reassurance at this point.   Some part of the book mentioned feeling like a black cloud had settled over our lives, and that was exactly how it felt to me, at that point.  Finally, a long two days after I was released, Caleb managed to get an ounce of formula down.  We were free!

Headed home to start our new lives, still uncertain what that exactly looked like.

The first few months were filled with new people, new information, new expectations.  We met with the Early Intervention program, and began therapies.  Our lives soon were quite full with traveling here and there – doctor visits (he was also diagnosed with two heart conditions that first week, as well as hearing issues), therapy, meeting with local support groups, and just re-learning what it meant to have a baby in the house again.  Online support groups were helpful as well.  Family and friends were told, and every single person was supportive.

Months passed, and Caleb turned one.  I felt a wave of relief wash over me.  We’d made it a year.  We were settled into our new normal, and knew, for the most part, what we were dealing with as far as health issues.

Looking back, almost 10 years later, I can reflect on the impact Down syndrome has had on our lives.

For us, it’s been huge.

I dove in to the world of disability, and have been involved in a number of organizations and groups since we had Caleb.  I’ve worn the hat of motherhood, but also that of advocate, friend, mentor, confidante, and advisor.  I’ve worked with many families and heard many scenarios.  Some things are consistent.

-Whether you hear the news pre- or post-natally, it’s a blow.  It’s a shock, most of the time, completely unexpected.  “I wasn’t that old” is the most common statement I hear.  Parents in their 20’s and 30’s made up most of the families that I worked with.

-It’s a different experience for every family.  No two kids with Ds are alike, just like no two typical kids are alike.  Some kids have more health issues, some have behavior issues, some talk early, some walk late (Caleb).

-Information and support is there.  These days, many families find support online, and in person.  Local support groups can be terrific.  It’s great to talk face to face with people who have been-there, done-that; to get the scoop on resources, doctors, and therapists.

-Anyone can have a child with Down syndrome.  Ds doesn’t discriminate based on race, ethnicity, social status, or income level.

-The future looks brighter and brighter for individuals with Down syndrome.  More young adults are working, going to college, participating in community activities, and included in all sorts of social and educational situations than ever before.

People fear that Down syndrome may be fading away, with the increase in number and accuracy of prenatal testing.  That may be true.  But for those of us who have chosen to raise our children, the best we know how, the outlook, in my opinion, looks better than ever.  I absolutely consider us to be one of “The Lucky Few”.

 

Hi, I’m Karen. Happily married for almost 28 years, my husband and I have four children, two together, and he has two adult children, and I’m Nana to three great grandkids.  We love life in Florida, and love to travel. We joined “The Lucky Few” just about 10 years ago, when Caleb was born. I’ve worked in the disability field for most of that 10 years now. In addition to work, I’m a lifelong runner and sports junkie. I love chocolate and cheese equally, and despise being cold. When I’m not driving Caleb around, you can find me working out. I’m currently an athlete ambassador for the National Down Syndrome Society, and sit on six disability-related boards here in town. I love to advocate for “our kids” and help parents in their journey.  You can follow Karen on instagram @karenjp0915