Emarie’s Birth Story

March 9, 2011

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So, I actually was inspired to do this awhile ago, when I read something on the Chromosome 18 blog about peoples experiences when they had their affected child. So, I have been thinking about doing this for awhile. But, for those of you that knew me back then, you can understand that it is hard for me to relive. However, I think it’s important for it to be documented and for people to know about it.

So here it goes, and I will warn you, that this does get graphic at some points! But most of you that read this are women who’ve been through this before, so I’m not going to apologize:

I’ll start off by saying that my pregnancy was relatively normal, other than being horribly sick the entire time, I mean like death sick (actually lost weight my first trimester), in fact I would even joke that if she didn’t sleep at night, that I probably wouldn’t have more kids! But, she was a fantastic baby, couldn’t have asked for a better one! I also had an unusual labor and delivery. So, I mean to say, tests were mostly normal, ultrasounds and such as well. No red flags saying that this baby may have a chromosome abnormality. I have been asked before if it would’ve been easier for us to know before she was born. And honestly, I can see both points. But, as of right now, I think my answer would be no. The reason being, I would not have wanted to grieve for my baby before I laid eyes on her, if that makes sense at all. Because, after I could see her, and see the spark in her eyes, I think it made the news a little easier to bear. However, I did not experience it the other way, so I’m not entirely certain on that perspective.

So, back to my point. But I should also mention that there were 3 other women in my family that were all pregnant with girls. All had due dates close to mine, but I was the first due. All of these women had their babies before me, and all came out perfectly healthy. That’s really what made those last two weeks (when I initially started labor) especially hard. I was absolutely miserable and thinking that any day now this baby would come, but she didn’t. And I was having to watch as all these women that were supposed to have their babies after me, were getting there before me. I wasn’t really mad (not at all!), it was just a little frustrating, because I thought, no one wanted this more than I did (since I had had miscarriages), and it just wasn’t happening for me. And whether that’s true, it’s just was how I felt at the time.

So, yes two weeks before my due date is when things really started to happen (in leeway of labor that is). I had to quit working a little before I planned, only about a week though, since it was Christmas break. Those two weeks were some of the hardest of my life. I was having consistent contractions (or so I thought) and was expecting each time I went to the doctor to be told I was well on my way. Didn’t happen. I was never more than dilated to a one each time I went in, with no end in sight! Obviously there was an end, since Em is no longer inside of me, but I’ll tell you, those last three days were absolutely the worst of the whole ordeal! I can’t even tell you how many times I checked into the hospital in those three days. The saddest part is, the nurses told me my contractions were regular and registering as hard labor contractions (that’s when you have to push), but that there was nothing they could do because I was not dilating. I didn’t sleep at all those three days, neither did Steve. On my actual due date (which was the 23rd) after being given my umpteenth morphine shot, told sorry, that I should go home and get some rest and come back if it gets worse. Well, I’ll tell you, I don’t think it ever got worse! So, we were home, and I kept switching from the bathtub to the bed with Steve rubbing my back the whole time. Until finally, I exclaimed, “Take me to the hospital, they won’t be able to tell me to go home NOW!!” I had to explain to Steve that my water had broken. And boy did it!! I had to shower quickly, changed into some pj’s (which were still soaked and…. yeah when we got there 5 mins later, it was literally gushing out of me!). Steve drove about 75 mph on a 25 road with the emergency flashers on, since we were both a little worried about all the blood, and we got there in record time (even though we’re really only about 5 mins away driving normally)! I think Steve got a wheelchair and pushed me in, and I vaguely remember a security guard escorting us to the labor and delivery floor.

After getting checked in, I overheard the nurses saying they needed to assemble a team since they were concerned about the blood in the fluid as well as there was meconium present. All things that show a baby is under stress. Which yeah, if those three days were that hard on me, you can bet they were just as hard on her! It took really no time at all for the anesthesiologist to come in and administer my epidural, which was what really got the ball rolling! Because my contractions were right on top of each other, it never gave my body a chance to relax and progress. I was actually able to sleep, and in the time I got the epidural, I dilated from a one to a ten in less than three hours. In fact when my mom called to see if she should be there, a nurse had told her that since I was still only a one, it probably wouldn’t be until the next afternoon. Not even close!! I had woken up from my short, but desperately needed nap and informed the nurses that I felt like I needed to throw up. They checked me and said they would need to get the on-call doctor because little Emarie was crowning. And let me tell you, I threw up and pushed, uhm, maybe once, and Emarie was out at 5:08 am on Christmas Eve 2007, with the doctor barely getting there to help with the cord that was somewhat wrapped around her neck! She weighed 6 lbs 10 oz and was 19 inches long.

But, they wasted no time in their effort to vacuum her out, since meconium for a baby can be very dangerous. That was when they noticed her cleft (it really probably wasn’t that hard since she had a completely non-existent roof of her mouth), and what they then called “clubbed” feet. They also informed us that she wasn’t breathing very well, so they would probably have to take her to the NICU for awhile. So, I didn’t really get much of a chance to look at her, let alone hold her. But, they assured me, that this was just a precaution and that she should be fine and I would see her soon. After being wheeled back to my recovery room, that was where I really fell asleep, and Steve left to go home to shower and what not. By the time he got back and I woke up, I realized it had been 6 hours since I’d had Emarie. And I didn’t know what was going on. That was when the on-call pediatrician (most of these were on-call since it was Christmas Eve) came in the room. She asked us first off, what we knew about our baby. I’d said that we knew about her cleft and her clubbed feet, and that she was having breathing problems. She then informed us that they had also found a heart-murmur and that she’d failed the newborn hearing screen, and that this particular pediatrician was pretty sure (well she did say 99% sure) that our baby had Down’s Syndrome. This was more than a little shocking to hear. Now, I’ll admit that I hadn’t really had a decent look at my daughter yet, but I know she didn’t look like she had Down’s to me. This was when I demanded to see my baby. They then brought her down to me and the doctor that was supposed to do her EKG (to look at her heart) came and did it on the floor where we were. Thank goodness he said that the murmur she had should close up on it it’s own within a couple of days!

I can’t tell you how hard it is to go home without your baby (some of you know). Emarie was in the NICU for nearly a month, and then transferred an hour North to Primary Childrens for another week. She finally came home to us on January 21st. But, that was short-lived when we had to take her back the very next day and she stayed for another 3 days. Two weeks after she was born was when we were informed of her actual diagnosis, this geneticist was quite possibly one of my least favorite people on the planet.

After 3 birth defects, it is mandatory for a pediatrician to recommend genetic testing. This was Dr. Bailey that ordered this, who has been Em’s pediatrician ever since, and we love this man with a passion! That man came to the hospital every single morning before 7 am to ensure he would have adequate time to assess Emarie before he needed to be in the office. He would then call us on his personal cell to give us any new details or suggestions that he had. We are eternally grateful for the love and compassion that he has shown and continues to show our little girl. So, he referred us to the geneticist at Utah Valley and I won’t say her name, but some of you that read this know her, and all of you have agreed with my opinion of her, and I’m grateful we didn’t have to deal with her ever again after this particular night!

So, I know I’m back-tracking, but bear with me! So this was about 2 weeks after Em was born. They had taken the arterial blood sample the day she was born, but it takes about 2 weeks to get the results. So we were called by the geneticist that she wanted to meet with us at the NICU that evening to go over the results. Let me just say, that I thought we would meet in private, in her office or something. But, no, we were right in the middle of the hustle and bustle of the NICU, where everyone could hear what was being said. That was the number one thing she did wrong! She then handed me a small stack of copied papers that were copied out of a book that was dated in the 70’s. To this day, I have no idea where those papers are, and I’m pretty sure they ended up in the garbage that night. She then proceeded to tell us that our daughter had a very rare condition called, 18 q deletion syndrome. She then drew a picture of the chromosomes to explain it. Essentially Em is missing the bottom part of the q arm (which is the arm on the bottom) on one of her 18th chromosomes. She told us that she didn’t know much about this and that it is really rare. She couldn’t give us much information except the worst case scenarios, which would be that Emarie might not ever walk or talk, and with all chromosome abnormalities there is always profound mental retardation. This is the point where I start bawling, here I am holding my precious, most gorgeous (I think anyway) little girl in my arms, with tears streaming down my face, and this doctor is looking at me like I’m something foreign. She then says, with no remorse in her voice, and completely drenched with disgust, “Is this a surprise to you?” I swear if Emarie was not in my arms, I really would have hit this woman. To think, even if it isn’t a surprise, it’s still not an easy thing to hear about your child!!

So, I will tell you that we would have been completely lost had we not found the Chromosome 18 website! The stories on there of hope and inspiration, literally picked us up and saved us. And for that, we will eternally be grateful. We now know that our daughter does talk and most likely will walk! And to quote a dear friend of ours who said this about her own little boy, “Emarie is anything but profoundly retarded!” And I have vowed to do everything in my power to help the efforts of research for Chromosome 18.

So that is the story of how my little Emarie came to earth!! And I know I’ve left things out, but this is already way too long! So, if there’s more you want to know, all you have to do is ask!

For more incredible stories from Alisha about the beautiful Emarie, click here.

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