I thought I'd write this down so that I could explain to you all the last couple of weeks without reliving it more than once.
Let me just start off by talking about my pregnancy so far. I found out very early that I was pregnant, before I even missed my period. I was only about 3 weeks and a couple of days. Since we lost the last two pregnancies, I have been extremely, probably excessively cautious. I didn't take any risks, and cut out everything that you're not supposed to eat or drink during pregnancy. And completely cutting out caffeine cold turkey is a hard thing for me! I do not like to take any medications, and suffered through a migraine for 24 hours on two occasions until I finally broke down and took a Tylenol. All of my household cleaners are homemade, natural concoctions, so that I'm not exposed to any chemicals while cleaning.
So if you're having a thought that what happened to our baby is somehow caused by something I did, then please keep these thoughts to yourself. They're hurtful and completely untrue. I've gone over it a million times in my head and bugged my amazing doctor about every little thing that I could possibly imagine could be the cause. I don't believe there's anything I could have done to cause or prevent this.
Now, on with the story.
We had a routine ultrasound scheduled for 19 weeks, on a Tuesday morning. The Sunday before, Zach and I went to church together. The message was on pain and suffering. Since I had already worried about everything I could think of that could go wrong with this pregnancy, of course I wondered if God sent us this message so that we would be able to find a way to cope and rely on Him if something were to be wrong with our baby. I even asked Zach if he thought that God sent us that message because something is wrong with our baby. But I tried not to worry and tried to be excited about seeing our baby and finding out the sex.
The morning of the ultrasound I went into full panic mode. I was so nervous that I think I went pee every 4 minutes or less. But when we saw our baby on the screen and everything looked normal, I started to calm down. We saw the little heart and the little kidneys, and I felt relieved. I cried like a baby when we found out it was a girl, and even asked the ultrasound tech to double check.
She left the room afterwards to show the images to the doctor. When it took a very long time, I started to panic again. I knew something had to be wrong for it to take this long. The doctor finally came in with the ultrasound tech (not my normal OB) and started looking at the screen. I asked if something was wrong, and his response was "Yeah, probably."
The ultrasound showed that she had club foot on both sides. Of course we were shocked and wanted to know how they could tell, how sure they were, and a million other questions. He told us that this is not something that they were mistaken about, they can be sure about it. He also told us that when they find one abnormality, they like to check for other things, so I should have more tests. This was the part that worried me the most.
When they left the room I cried a lot and looked on Google on my phone to try to find the causes of club foot. On the list of possible causes were Spina Bifida and Trisomy 18. I made Zach go get the ultrasound tech and ask her if the spine looked normal. She said as far as she could tell, it did.
Of course, I went home and looked up everything I could, including Trisomy 18. I found out that it's 100% fatal, most babies being stillborn or dying shortly after death. My OB called and recommended that I go get an amnio as well as a level 2 ultrasound with a doctor that specializes in high risk pregnancies. I scheduled both for the following morning. The rest of that day, I think, I spent crying and staring at the wall, but I don't really remember. I could deal with having my baby's legs in casts and braces for a couple of months, but all the other possibilities? I wasn't sure. I did manage to still put together our gender reveal. I think I just decided that no matter what happened, she is still our baby girl and I still wanted to try to be happy and excited and do everything that I had originally planned.
I was sick that day and most of the following days. I had to work hard to control my anxiety attacks. So it's not a surprise that I was a wreck at my appointment the next day. But the doctor was wonderful and had printed us a two-page list of possible causes of club foot. One by one, he went through and crossed off the ones we could already rule out. He also pointed out the ones that we could probably see signs of on the ultrasound, and what he would look for to rule those out. For example, if she had some kind of muscular disorder, then she would have problems in the upper extremities as well. But if we saw her waving her little fingers, then we could rule those out. This helped a lot and gave us something to focus on while the ultrasound was being done. We watched her wave her little fingers and were very happy. Again, we didn't notice anything abnormal (besides the club foot), but he did.
He came back and told us that she had some other abnormalities in her lower extremities, including the fact that her fibulas were either completely missing or he couldn't see them because they're not ossified yet. Either way, he should have been able to see them since he could already clearly see both bones in the arms. He said this made him think that there may be some kind of genetic disorder, although he's not sure which one, and that we should definitely do the amnio to find out.
After hearing this news and preparing to have a giant needle stuck into my belly, you can imagine my anxiety. I was shaking uncontrollably and had to really work to calm down so that he wouldn't miss when he stuck the needle in me. But the amnio itself was actually not as bad as you would think. I just didn't watch and I was fine.
It was another hard (and kind of fuzzy) day after learning even more bad news and now being even more worried about those terrifying genetic disorders. I think I probably just cried a lot, prayed, and rested since I was sore.
That day during my obsessive googling, I came across some information on fibular hemimelia. Since that day I've been researching it nonstop. I would advise against googling this condition, since you will see a lot of very, very scary things. Basically, it's the absence or underdevelopment of the fibular bones, which causes a lot of other abnormalities in the lower extremities. There is a huge range of differences in the way it presents. There are very extreme cases and milder cases. It seems like every case is probably different from the next. It's very, very rare, and having it on both sides is even more rare. Treatment ranges from just a couple of corrective surgeries, to amputation of the legs. We have come to accept any of these possibilities.
We still had to wait 5 days not knowing if the other (really scary) possibilities would happen. We worried the most about trisomy 18. But the doctor's office called on a Monday to give us the initial results of our amnio, which showed that her gross number of chromosomes was normal. Our biggest fears were relieved, since this meant that the fatal syndromes we worried about could be ruled out.
I asked the nurse if the doctor could call me himself, and he did not too long after. He explained that we still needed to wait for the microarray, which would give us a full picture of baby girl's genes and tell us if she has any of the more rare genetic disorders. Those results take a couple of weeks, and we are still waiting. He also said that with the information we have so far, it looks like it could be fibular hemimelia.
This all means that we can probably still have a healthy, happy baby girl. She may have a more difficult life, more surgeries, possibly prosthetic legs, but hopefully she will be normal in all other aspects. Again, we still have to wait for the full results from our amnio to rule out any other genetic disorders. But we are praying hard and we believe that God will come through for us.
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