Hello. Welcome to my blog. My name is Kim and I guess I finally found a topic for a blog that I've been wanting to start for awhile now. My hope is that through writing this blog, you can follow me along this journey. It's like a story that unfolds each and every day. I wish I could tell you that it will have a happy ending. All of the short stories I have written have happy endings. I have no idea how this story will end. It is the story of my sweet little baby that I carry in my womb. I hope that by experiencing this journey together, we all will have a better appreciation for the precious little lives that God gives to us. For parents going through similar situations, my hope is that this blog will serve as a way to unify our hearts and tears...and for healing for us all.
October 21, 2010. This day stained my mind and my heart. My appointment with the Perinatal specialists was at 1:45 PM. I was 12.5 weeks into my 3rd pregnancy and excited to soon be "out of the 1rst Trimester woods" so-to-speak. I'd been experiencing a lot of nausea and acid indigestion and really having a rough time making it through most days. I tried to eat something bland for lunch so my stomach wouldn't revolt during my 2-hour long appointment. My boys, Sammy (age 5.5) and Benny (almost 3) would eat lunch with Daddy while I was at my appointment.
The purpose of this appointment was an in-depth ultrasound that is usually done around 12 weeks or so of pregnancy. I'd had 3 ultrasounds already and no problems. Baby's heartbeat looked great. No problems. First round of bloodwork all looked great. I'm new to the 40-year old club, healthy and so excited to be pregnant with our 3rd child.
For the first 40 minutes of my appointment, I sat through an interview with the genetic counselor. Even though I'd had a neucco-screen before with my previous pregnancy, I hadn't ever heard of all of the facts my counselor threw out. She asked all sorts of family questions--our backgrounds, our family medical history, etc. We had nothing to report--I guess our histories were pretty standard, nothing earth-shattering to share. I even had my husband Alex, call his parents the night prior so he could find out if there were any cases of birth defects in his family. Since he was taking the boys to lunch and then coming back for the ultrasound portion of the appointment, I did my homework ahead of time.
After answering a gazillion questions--"Do you do drugs?" "No." "Do you drink?" "No." "Is there any chance you and your husband could be related?" (Guess you never know what they'll ask!) "No, ma'am," the counselor started explaining what they would be looking for in the ultrasound--measuring the thickness behind the baby's neck. A certain level of thickness could indicate that the baby may have Down's Syndrome, or Trisomy 21. I really was fascinated with her explanations of how the chromosomes come together and split to make the baby. Even though part of me was a nervous wreck inside, I tried to ask intelligent questions and to remember what she told me.
Finally, it was time for me to move on to the ultrasound portion of the visit. The counselor said, "Don't worry. I know all of this sounds scary but you have a 98% chance that everything is just fine." Sounded good, right?
I found my husband and boys and went in for my ultrasound. The boys, especially Sammy, were so excited to see the baby. Sammy loves learning about the human body so he was full of questions. He was a little chatterbox through the whole exam. I remember hoping that he wasn't distracting the technician.
After a couple of minutes, I asked the technician if she had found the heartbeat. She said yes and then I saw the little flicker of the heart. I laughed and said, "That's a good thing--always good to start with the basics!" The technician continued to push around my abdomen to get a good view of the baby from all sides. It wasn't the most comfortable ultrasound but I focused on watching the screen and seeing my baby squirm and wiggle--especially when she poked him to get him to flip this way or that way.
Let me stop to explain something quickly, I am calling my baby 'him' at this point even though we don't know the gender. I can't call him, 'it' because it's too impersonal. Because we have two boys and would most likely have a third, I decided early on to call the baby, "he". If the 20 week appointment confirmed it was a girl, then I'd be thrilled! But for now, I'm in love with my little baby boy.
After awhile, I noticed the technician doing some of the same measurements over and over. The neck thickness. The heart beat. The facial angles. I wondered in the cheeks were flat like the counselor explained was a sign of Down's Syndrome? I couldn't tell. When she was done, she said she would get the doctor and he would come in to explain everything to me. The boys were starting to get squirrelly and Alex was getting tired. I asked everyone to hang on for a bit longer.
The doctor came in, shook our hands and sat right down at the computer. I remember thinking that it was odd--I could have sworn the technician took my file out to him and they were gone for awhile. When I saw him leaning on the desk with his chin in his hand studying the screen, I knew for sure that something was wrong.
He asked me to undress from the waist down so they could do a transvaginal ultrasound. I knew things weren't right. When they came back in the room and he looked at the baby's stomach one more time, he had a dark look on his face.
With a sigh, he looked at me and started by saying, "We have some serious issues here. There are some severe problems." He went on to list things like: thickness behind the baby's neck, extra digits, a portrusion in the abdominal wall and a cleft lip. Never in my life could I have imagined hearing such things. He said that while we didn't know for 100% sure, chances were highly likely that my baby had Trisomy 13 or 18, but he was pretty sure it was Trisomy 13.
Suddenly the the genetic counselor's information and diagrams came flashing back in my head. I was thinking, "Wait a minute, isn't Trisomy 13 the most rare of the chromosomal abnormalities that a baby can have?" People sometimes say that time stops when they receive horrible news. I wish I could say that time did stop. I'd give anything if it just would have stopped. It didn't. It just kept ticking on with each second, each minute getting more and more unbelievable and awful with what the doctor told me.
The doctor put his hand on my arm and said, "I'm very sorry." Again, more red flags went off in my head. It was almost like I had to pump him for the 'bottom line.' It was then that he told me that my baby had an 80% chance of not making it to term. It was difficult for me to form words at this point, but I asked, "So, are you saying I'm just waiting for my baby to die? That it's just a matter of when and how?" He said, "Yes."
I don't think any woman ever wants to use the words, 'baby' and 'die' in the same sentence. It should be illegal. It was almost surreal as I used the words. The doctor said I would more than likely miscarry. Again, more shock. Don't the statistics say that once you see the baby's heartbeat, once you reach the end of the first trimester, you have something like a 95% chance that everything is good and that you won't miscarry? What good are statistics like that? Again, I asked, "So, I'm waiting for my baby to die? Is that what you're saying?"
My mind raced ahead through the next 6 mos. Trick-or-Treating is next weekend. My mom's birthday is this weekend. Thanksgiving. My husband out of town for various November weekends. Christmas. Do I just continue to live my life waiting for this awful thing to happen to me? It could happen at any time. How? How do I do that? How do you continue to get bigger, wear maternity clothes and at a time when you should be getting things ready for the baby, instead prepare yourself for your baby's death?? How? How do I do that?
Of course the doctor ran through my options--have more testing done to confirm which chromosome was extra, wait and do nothing, or terminate the pregnancy. I shot the testing down right away. If they weren't even going to do the finger-prick blood test on me because things were so obvious on the ultrasound, why should I go through more tests to hear that everything is what they thought? It sounded pretty bad as is. The counselor said that even if it wasn't Trisomy 13, it was probably something else very rare.
That left me with my other options to consider. I always knew that termination was never something I could do. I am praying for guidance right now. I have my standard doctor appointment in a few days and I hope to get more questions answered.
Before we left the ultrasound woman, I asked the technician for my pictures. She had told me that they would be taken at the end and I had asked her twice for them. She looked uncomfortable and printed three from my exam. One was from the top down so you couldn't even see my baby. The other two were vague, but still show my baby. I thought, every other woman left here with baby pictures, why shouldn't I? It was just all so sad. They left with smiles, I left with a face streaked full of tears.
Finally, it was time to go home. I'd been told, "I'm sorry", one too many times by nurses and felt like it was all hollow sympathy. I knew they meant well, but it was just overwhelming--especially the whispers and glances from them as I came out to the main desk. It was like the news that a woman's baby had been found to have Trisomy 13 spread through the office like wildfire. I found myself thinking that doctor's offices like this should really have a "bad news exit" for women who've just found out that there dreams were shattered. The worst I thought would happen at this appointment is that I would find out my baby had a chance of having Down's Syndrome and that I would have to start preparing myself for that. I never knew that I could learn something so awful, and that my baby's life will more than likely end before I can ever hold him.
The rest of the day was as they say, a blur. We went costume shopping for the boys. I got myself a Princess costume because Sam and Ben want Mommy to be a Princess. Sam will be Ironman and Benny will be Thomas. Daddy will be a pirate. You might think it's silly to dress up as adult but we do it for our boys. Some day they'll probably beg us not to be near them on Trick-or-Treat Night, but for now we're loving every minute of it.
I finally ate dinner around 8:00. Every swallow was an effort. I seriously hoped I wouldn't choke on my food. Later I researched Trisomy 13 and found several children born with it. Every parent said they wouldn't do a thing different even if they only got to hold their child for a few minutes or hours. Most of those stories were from people who didn't know their baby had it until they were born. I hope to find stories of parents, like me, who found out so early in the pregnancy.
Where do I go from here? I guess I just wait. It's possible that things might just happen on their own and I might miscarry at any time. I'll meet with my doctor and pummel her with questions in a few days. I'll pray. I'll cry. I'll cry some more.
This is a journey of unknown depths, highlights, pitfalls and sadness. I truly hope it ends with something beautiful, somehow...I'll keep you informed.