Wednesday, August 18, 2010

How we knew

One of the questions I get asked the most is how we found out we were going to have a special child. Let me start by going back to 2004. This is when John and I found out that we were pregnant with our first child due in August of 2005.

During a routine ultrasound in February of that year we learned that our baby had a large fluid filled cyst on the back of her head called a cystic hygroma and could also possibly have Turner's Syndrome. We were referred to specialists and several weeks of hell ensued consisting of numerous ultrasounds, doctor consultations, an amniocentesis and a whole lot of not knowing what to expect.

During this time I was a complete basketcase to say the least. We didn't know what the diagnosis meant exactly but knew that our baby could be born "different". I remember very clearly sitting on the couch with my mom who had come to be with me (as she always does) and crying uncontrollably saying, "I can't have a child with something wrong with it...I just can't." And I didn't. The baby's condition was fatal and we lost her on March 4, 2005.

As terrified as I was at the thought of having a child that was different, I was still completely devastated...and angry. And I stayed that way for the next few years. I did seek the support of other women who had also been through a loss which helped, and I was blessed to make an AMAZING lifelong friend out of it (you know who you are!). I found that most of us fell into one of two categories: either wanting to try again for another baby as soon as possible, or not even wanting to think about it. I fell into the latter category.

Then in September of 2007 we found out we were pregnant again. Shock, excitement and overwhelming fear were among the gamut of emotions we felt. Like most women, the first 12 weeks were met with tenuous optimism but we eventually made it through the first trimester and began feeling some relief. The next hurdle was 16 weeks - the same stage when we learned the fate of our first baby. Then it was 20 weeks - the time when we lost our first baby. After that I actually began to feel pretty confident that things were going to be okay. But I had forgotten about February - the same month we got the news about the first baby. So here we are, February of 2008. I'm 26 weeks along, going in for another routine ultrasound and it happens AGAIN. It's never a good sign when your ultrasound tech gets really quiet and excuses herself to get the doctor.

This time we were told that our baby's head was measuring small (3 weeks behind to be exact) and we would need to see a perinatologist. Oh here we go again. A small head? What does that mean? If it has to do with the head, it can't be good...

We learned the medical term for this condition which is microcephaly, and the doctor also told us she appeared to have a recessed chin. He informed us that when two or more anomalies are detected it's indicative of a syndrome and we were referred to a geneticist. She measured our heads, took a complete family history and told us there were 246 different syndromes that our baby's particular anomalies could be related to, and we would just have to "wait and see" (and endure high level ultrasounds every few weeks to measure her head) until she was born. We were 14 LONG weeks away from her due date. Google became my worst enemy as I spent hours and hours researching every syndrome that appeared for the search terms "microcephaly" and "micrognathia" (recessed chin). I just wanted to know what to expect so I could prepare myself. I just wanted to know if she would live.

Just shy of 36 weeks I began having contractions so John took me to the hospital where they stopped them with medication and told me they would like for her to wait at least one more week. Well, anyone that knows Ella knows that she plays by her own rules and so three days later I officially went into labor. After 21 hours, Ella Grace was born via C-Section weighing 5 lbs. 1 oz and measuring 17 inches long. In my drug-induced state I could only mutter the words to ask John if she "looked normal" before I got a quick glance of her myself and she was whisked away to the NICU.

It wasn't until the next day that I was able to see her. I couldn't believe all of the things the doctor had said about her were true when I finally got to lay eyes on this beautiful child. I knew she was going to be okay and I did not care what they said she had "wrong" with her. She was my baby, she was beautiful and it was love at first sight - well, maybe second sight in my case due to the circumstances! And most of you know how the story goes from there.

The best way I've heard it described as to what it's like having a special child is an essay written by a woman named Emily Perl Kingsley called "Welcome to Holland":

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(c)1987 by Emily Perl Kingsley. All rights reserved

So I believe now that back in 2005 I was getting ready to board that flight but just wasn't quite ready for the journey. There were other plans for me. I do believe that as cliche as it sounds everything does happen for a reason - no matter how bad it may seem at the time, there is a reason. I was being prepared for this journey with Ella Grace and though the loss of our first child is still painful, it is what was meant to be. We finally got to Holland and let me tell you, it is breathtaking.

EG's first picture

I finally get to hold her


  1. Holland is beautiful and so are you...inside and out. Keep writing.

  2. My pregnancy with Mason was almost exact as far as finding things out the SAME way, and worrying... I am so sorry for the loss of your first baby, but she did prepare you for that trip to Holland! :) I love Holland! I got to meet you, John and EG there :)

  3. Thanks for your post. I love the poem. I too am happy to be in Holland. It has not always been easy buthas always been worth it.

  4. Thanks for your post and the adorable newborn photo!!! We found out about the arm anomalies at 12 weeks and figured out it was probably CdLS (ourselves, not drs) a few weeks later. I was so happy that it was because all the practically other things were fatal.

    What a blessing our kids are though!!

  5. You are so right. I too lost a baby in my first pregnancy, I had such a feeling that things weren't right with him. The experience put me off getting pregnant for many many years. When Ryan was diagnosed with a cystic hygroma at 11 weeks and thankfully made it through (with some complications) I now know that that first trial run ended because I wasnt yet ready for this journey. Ive always known in my heart I would have a special needs child and God knew when the timing was right.

  6. I admire u so b/c u knew something was wrong 2 times and i couldn't imagine ur thoughts and feelings and enduring that until u gave birth. I pray that EG gets well and stays out of the hospital so that u too can enjoy each other without the sickness. I will keep u all in my prayers and u ROCK! <3 God bless : )


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