Down Syndrome Awareness Month

October is Down Syndrome Awareness Month.  The perfect time to share the story of discovering I would be blessed with a special child, the ensuing pregnancy and how we almost lost him.

A Little Background

At 17 weeks pregnant,  blood test results told me that Bella might have a chromosomal disorder.  My gynecologist set me up with an ultrasound test for the next day.  Some of the ways you can detect the chance of Down Syndrome via ultrasound are by the length of the arms and legs along with the neck fold at the back of the head.

All of Isabella’s body parts were a standard size.  The doctor told me he couldn’t be 100% certain, but was 95% sure that the blood test was wrong.  I told my gyno, and he said to me that I would have to have an amniocentesis that day to be sure.  At 17 weeks, the window was closing for the test.  I opted not to get the amnio and went with the ultrasound results.  Three days later, I got an apologetic call from my obstetrician.  They had given me the wrong test results.  I felt terrible for the other mom.

Since I was 37 when I had Bella, I had given myself a time limit for #5.  We never did anything to prevent having another baby so that it could have happened anytime.  However, if I wasn’t pregnant by the time I turned 38, I was no longer going to try.  The older you get, the higher the chance of having a baby with DS.   I was willing to roll the dice again, but I also knew four kids was good enough.   Month after month, the period came.  In July of 2000, I told Freddy that if I was not pregnant the following month, we were packing it in.  Low and behold in August 2000, I skipped my period!

Pregnant Again!

The pregnancy was confirmed days before my 38th birthday.   It was meant to be!   During my first gynecological visit, I was told  I could go to Yale-New Haven Hospital and get a blood test.  It was new, but it could tell me with great certainty at ten weeks pregnant if my baby had Down Syndrome.  I was skeptical after my mistaken test results with Isabella, but what the heck, I would go.   Bella was just about a year old, so we made an appt, and the three of us went.  It was a simple blood smear and again – I was skeptical.  How could this silly smear on a piece of paper tell me if my kid would have a chromosomal abnormality?

We talked to a geneticist, they explained how it worked, and we did it.  Bella was a little cranky that day after being in the car and sitting in the stroller for a few hours, so Freddy took her for a walk.  I told him not to go far, and I would let him know when the doctor came back with the results.

When the doctor returned,  I told her I wanted to wait for my husband. 

I called and told him to get back, and she proceeded to provide me with the results without waiting.  It was so insensitive, and I was angry.   Here I was alone, and she was telling me that there was a better than a 50% chance that Joey had Down Syndrome.  Freddy walked in the room a minute later to see me upset and complaining.  How could she do that to me?

She looked like she may have felt bad, but I didn’t care.  She just told me my baby more than likely had a chromosonal disorder.  I was stuck between mad and scared and I couldn’t get out of there fast enough.  The whole way home, I tried to convince myself and Freddy that this test was wrong too, and I was going to prove it.

Next Test

So here I am again – I got an appointment right away with the same doctor who did all my ultrasounds.  This time, he wasn’t so sure.  The arms and legs were short in proportion to the trunk. I told him that my husband is built that way too as was most of his family: longer trunks, but shorter limbs.  This sweet man smiled and agreed that could be the reason and went on with the test.

The heart was good but had a small hole.  Common in Down Syndrome babies, but also happens with typical children too. The stomach and the rest of the organs looked good. Then he measured the neck, and the neck fold was too thick, another sign of DS.  But that doesn’t mean anything to me; maybe he will have a fat neck?  I had a reason for everything.

This time the doctor told me that unfortunately, he could not give me the same reassurance as with Bella, The case was stronger, and the baby did have the signs of Down Syndrome but left the door open that he could be wrong.  He wanted me to have hope.

Since I was only 12 weeks along, I had to wait a month before I could get an amnio.  I am sure that I told everyone my reasons for why I didn’t think this baby would be born with disabilities and nobody was going to disagree with me.

Amnio Results: Down Syndrome

The time passes, and I go in for the amnio.  I hadn’t had one before,  but this time the odds were different. The test went fine, and this geneticist told me that she would call me with the results in about 7-10 days.  She would leave me a message if all were ok, but I would still have to come back and see her.  The time was passing, and I was checking the answering machine and my caller ID every day.

One day I get home, and her number was there, but no message on the machine. 

Uh oh.  What do I do?

The stupid things that run through your mind in panic mode.  Do I call and say I was just wondering if the results came in?   I didn’t want her to know I saw she called because then she would know I had caller ID.  I didn’t want to call people back if they chose not to leave a message.  In my head, that made me a crazy stalker.  I can’t remember how long I pondered this silliness before I called.

As soon as I said who I was, she started with an “I’m sorry … blah blah blah.”   I don’t know what came after that except the hysteria coming from me.  For the next day or so, I took turns between weeping and bawling out loud.  I was mourning, it was a different kind of grief, but you still feel a loss.

My husband laid in bed with me, holding me, but I was inconsolable.  Freddy never said how he was feeling.  He was just being supportive and trying to make me feel better.   He was my rock.

A day or two later, I picked myself up and said: “Enough of that, I have to start doing my homework.”  I needed to know what I should expect.  When we met again with the geneticist, she asked me if I wanted to know what the sex was and I said yes.  She told me I was having a boy!  I will admit that I was happy then and grateful now. Down Syndrome boys can’t procreate, but girls can get pregnant.  At the time, I also felt I had less to worry about in regards to sexual abuse – especially down the road; I don’t think that anymore.  I do worry!

Onward and Upward

One of the memories I have that always stood out to me, was the response from my gynecologists.  There were two at this practice, and you saw one or the other whenever you went.  My first visit after the news, the doctor told me I had until the fetus was six months before I had to decide to abort or not.  I was very taken aback. 

I don’t begrudge anyone making whatever choice works for them, but he didn’t even talk to me about it or ask how I was feeling.  It was almost as though he was giving me good news and telling me that I had plenty of time to decide.  I had already decided.  Honestly, there wasn’t even a debate.

God was giving me a gift, and I was excepting him with open arms.

The next visit, my other doctor, walked into the room and said “Congratulations!”  He told me I was going to be so blessed and treated it as though it was the best news ever.   That was a welcomed response,  one I wished that others would have learned.

On a different visit, he told me that 85% of children with DS are born to women under 35.  The reason being that they don’t have the amnio and don’t realize that their child is special until they are born.  The women over 35, have the amnio and choose not to birth.  That is their right, I do not judge, but that doesn’t mean it isn’t a sad fact.   I feel for those women, and they are missing out on something special.

After doing my research,  I had every test I could to be ahead of the typical worries that babies with Down Syndrome can bring.  Everything was great and forming as it should.  We went to see a  neonatal cardiologist for the hole in his heart and was assured it would close on its own.  There didn’t seem to be any significant concerns, so my stress was alleviated.

By the time I was six months pregnant, I had called to sign up for Early Intervention.  The social worker asked me how old my baby was and I said he wasn’t due for a few months … she laughed.   I didn’t know I was supposed to wait until I actually gave birth.   I was on top of my stuff.

How I Almost Lost Him

When I was around seven months pregnant, I started to get pain up my side.  The discomfort went on and increased for close to a week before I went to the gyno.   My doctor made sure I wasn’t in labor, but knowing that I never complain about anything, sent me to a neonatologist.  He figured after four kids, that if I was saying I had a pain, he was taking it seriously.

The neonatologist admitted me to the hospital with a possible kidney infection.   Once there, I started getting a severe headache, fever and was vomiting.  They gave me a heavy antibiotic and morphine for the pain.  I was worried about the baby getting morphine, but he assured me the baby would be fine.

At the same time, my hormone numbers were falling, and they told me I was in danger of losing the baby.  They dropped consistently for three days while I laid in a dark room not being able to move.  I couldn’t even get up to go to the bathroom.  I prayed, but I don’t remember being scared.  Was I not facing reality?  I prefer to think my faith would not be shaken.  I did not believe God would put me through all this, to take him away.  There was a more significant purpose.

On the fourth day, the numbers started going back up.  He was a fighter before he was even born!  Day five, I was back to normal and going home.

After that, I was at the doctor or the neonatologist every week, but it was all smooth sailing.   A couple of months later, on a beautiful Easter morning – my beautiful baby boy arrived!   Down Syndrome Strong!  

If you haven’t already,  you can read my story on Joey’s Easter birth.

Final Thoughts

If you ever come across anyone that tells you she is pregnant and having a child with disabilities – please say congratulations!  NEVER say I am sorry.  You can say, God Bless, give a hug and assure them that if they ever need anything, you are there.

Want to help me spread some love and kindness?  Visit my store Sunday with Sandy For A Cause.

For more on being the Mom of a special needs child, please read Special Needs Mom; A life of Advocacy.

Much love and have a happy, healthy week!

Sandy

#enlighten #empower #inspire #educate & please always #BeKind