31 for 21: Why we wanted our Son with Down Syndrome

Today kicks off the first day of Down Syndrome awareness month, and motivated by the 31 for 21 movement, I’m dedicating the first post in a very long time to our dear little guy, Luke, who is now 20 months old.  What I want people to know about Luke is that we have wanted him to be our baby for the longest time regardless of having an extra chromosome or not, and so many signs showed us that he was meant to be our baby and we were meant to be his parents.  I hope that I’m not repeating too much from the post on Our Story, so if I do, I apologize if any of this is redundant.

I get the feeling that some people think we have made a huge sacrifice by deciding to keep our son when we found out he had Down Syndrome, but I want people to know that we have never felt that way.  He was never a decision to be made or a cross to bear.  Quite the contrary – we consider him a huge blessing from the very beginning.  So even though the diagnosis was a shock and took a couple of days for us to absorb, all we ever wanted was a healthy baby.  So for us, there was no decision to consider.

A doctor (not our ob) once said “thank you,” and I was so confused about why he was thanking me.  So when I asked, he told me thank you for deciding to have your baby.  I didn’t know what to say to that because there was no need to thank me for having our baby who just happens to have Down Syndrome because there was no decision to make in the first place.  He was our child and we would love him no matter what, so there was no thank you required for something like that.  So even though he meant well, it shook me up for a long while.  I know that other people may not have the same journey as we have for their child, but the struggle we had also helped pave the way to why we wanted Luke so much.

Our journey started 1.5 years before Luke was born.  We have an older son, who is now 7, but he was not an easy child to take care of.  So the thought of another baby didn’t really enter into our minds until he was 4 or so.  We weren’t really planning for another child, but I found out I was pregnant the summer of 2012.  I was happy but concerned because I am a type 1 diabetic and the pregnancy wasn’t planned.  After a stressful couple months, we found out it was a blighted ovum as well as finding out I had Hashimotos Thyroiditis.  We were told it was just bad luck and to try again.

My husband was concerned on a number of fronts, so we agreed to continue to try until the end of the year.  At that point, I had an IUD scheduled to be inserted in December.  I had last minute reservations about complications, so I cancelled my appointment.  Then in January, I found out I was pregnant and was thrilled!  At our first high risk ob/gyn appointment, there was a heartbeat so we felt very positive that we wouldn’t have bad luck strike again.  Plus, unlike the previous pregnancy, the symptoms were stronger with intense fatigue and nausea.  I thought this was a positive sign and was actually happy that I felt so sick.  But in early March, I just felt like something wasn’t right.  I had a fetal monitor due to my health complications, but yet I couldn’t find the heartbeat.  Plus, I felt that the nausea was going away.  Even though that sometimes happens at the end of the first trimester, my instincts urged me to go see a doctor.

They scanned me and saw that even though my sac was the size of a 12 week pregnancy, the fetus had stopped growing after 7-8 weeks.  It was like my body didn’t want to realize that the baby was no more – it just wanted to hang on and desperately wanted to have a baby.  How could this happen again?  I was devastated and depressed as this second miscarriage so soon deeply affected me.  For weeks, I didn’t sleep well and scoured the internet for answers.  I read that many women who have Hashimotos have problems conceiving, and even if they could get pregnant, they were prone to miscarry.  The image of our perfectly formed fetus haunted my mind and I just couldn’t accept being told it was again a case of bad luck by our ob/gyn.  I just felt like something else was going on.

I was talking to my therapist about it and she suggested reading, “Is Your Body Baby Friendly?”  Well, this book changed our lives and is the very reason why Luke is here today.  I found out that because of my auto-immune problems, that my body was triggered to attack future pregnancies after being primed once my first son was born.  I was very lucky to find out that the doctor who studied under the author of the book had an office just 15 minutes away from my house!  Since there are only about 3 reproductive immunologists in the country, I couldn’t believe my luck!  So I made an appointment to see Dr. Kwak-Kim for early May since she typically is booked out 1-2 months ahead.  I was both relieved and hopeful that she could help us achieve our dreams of having another child.

We did our first initial battery of tests and I was to return a month later.  Such as fate would have it, I would return much sooner.  While we were on vacation in Florida, I found out I was pregnant!  I called their office and they told me to come in immediately when we returned.  So the morning after we got back, I was sitting in their office for my first ultrasound devastated to see that the area around the ovum was hemorrhaging badly!  My body true to form, was attacking Luke at 5 weeks, 0 days pregnant!  They put me on an emergency IV infusion of IVIg and a series of treatments including hormone therapy and steroids to calm my immune system down.  If just another day had passed before getting treatment, there is a good chance that Luke wouldn’t be in our lives today.

I was seen twice a week after that for the first trimester at Dr. Kwak-Kim’s office, checking the bleeding, pregnancy growth and heartbeat, all my numbers including hormone levels, blood flow to the uterus, all critical measures to save my baby’s life.  I did acupuncture twice a week, continued to do IVIg infusions and other treatments throughout my pregnancy to ensure the safety of my unborn child’s life.  Every time they put the ultrasound wand on me, I held my breath hoping that we would see a healthy heartbeat and praying for good news.  Every week, the bleeding got better and my connection with my unborn baby grew.

When I was 15 weeks pregnant, I got the wonderful news that the bleeding had completely stopped!  That same fateful day, we also received a call from our doctor.  Grave news that he delivered with serious remorse that our baby had a 99% chance of having Down Syndrome (based on the Materniti21 test).  I remember feeling shock and sadness about the diagnosis.  I didn’t know anything really about Down Syndrome and didn’t know anyone personally who had it or had a close relative with it either.  Since the NT test came back within normal range and nothing else came up on the tests or ultrasounds, the news came as quite a shock.  But I was confused on why the doctor had urged that we do an amnio soon to confirm the diagnosis for Down Syndrome.  He said we had to do it soon if we were going to make a decision.  What decision is he talking about?  I really had no clue at the time.

For the remainder of the pregnancy, my primary goal was to have a healthy baby, which we did.  I have no doubt it was because of the wonderful care we got from Dr. Kwak-Kim’s office to make sure my pregnancy was as healthy as it could be, with strong hormones to support it, great blood flow to the uterus and keeping my immune system in check.  I also think seeing an acupuncturist twice a week helped with having a healthy pregnancy too.  Trust me, that is NO easy feat, especially given my health issues.  But we invested probably $30-40k out of pocket (our insurance wouldn’t cover the necessary costly IVIg IV infusions for reproductive purposes but I have no doubt helped save Luke’s life) just so that we could have Luke here and as healthy as a baby can be.  There is no dollar value I can put on Luke’s life or his health, and I’m proud to be called his mommy.

Now, I reflect back on this and think how other families must have felt in the same situation.  I know that our circumstances were different and I think it’s because it was just such a miracle that we could have another child, so much so that it didn’t matter to us if he did have an extra chromosome or not. For those who have read “Welcome to Holland,” for us, it was “Welcome to Mars” because we had a trip to outer space planned and a trip to any planet is still an amazing trip to outer space!  But not everyone will have the perspective and experience we did, however, I know that many also feel fortunate to be parents of children who happen to have Down Syndrome (so don’t assume that it is their cross to bear should you come across a mother like myself).  But that is why we feel that Luke is meant to be our little Rainbow baby and why we wanted Luke so much to be in our family.  We love you dearly Luke!

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