Monday, August 18, 2008

Joy's Story

It's probably way over due for me to explain what exactly is going on with my sweet baby Joy.

Let me start from the beginning. I found out right before Easter of this year that we were expecting baby #3. Lewis and I barely had agreed on trying for a third and I don't know that I fully agreed with the idea because when I found out I was a little scared at the thought of a third child. Ironically enough the day before I had registered for school. I am wanting to take some prerequiste classes to get into the R.N. program at the local community college. I had decided I needed a career change and nurses seem to be always in demand so I figured it to be a wise choice. I digress....anyway, things went along like my other two pregnancies. Morning sickness reared her ugly head on que at about 6 weeks. I went in for a normal prenatal visit on April 28 and my OB could not find the heartbeart, which is not unusual at just about 10 weeks. I also questioned the due date they set for me, I knew I was not as far along as they put me. The OB thought it might be a good idea to get an u/s just to check on the heartbeat and also date the pregnancy accurately. See, I had been through this before....I lost a baby between Elijah and Phoebe, and at a 10 week u/s there was no heartbeat to be found. For some reason this time around I wasn't really thinking the worst and wasn't really nervous about the u/s.

I decided to bring Elijah with me that day to the u/s and it just so happened to be his 4th birthday. That's not why I brought him, but Lewis and I has a scheduling conflict and Lewis was unable to attend. So we go in for the u/s. To me things looked pretty noraml. I zeroed in on what I knew to be the heartbeat. I know I say I wasn't nervous, but seeing the heartbeat was still a relief. I figured as long as that heart was beating away everything was going to be okay.

I guess I was pretty naive looking back. The u/s tech pointed out two abnormailites that she had concerns about and was going to have the OB talk with me. She pointed out some excess fluid on the back of the baby's head, neck, and back, which she referred to as a cycstic hygroma. She also pointed out how the baby's abdominal organs were developing on the outside of her body called an omphalocele. At this point I did not freak out or anything. Maybe I was in shcok or didn't really take it all in. Thankfully Elijah seemed oblivious and more concerned with his toy car at the time. We went into another room where my OB came in with such a pitiful look and told me she was sorry. She explained that a baby with the 2 of these conditions would most likely have a chromosomal disorder and that they were wanting me to so see a specialist at a hospital in Detroit where she suggested I have CVS testing done and get further ultra sounds. Again, I think I was in shock...I was very calm. All I knew was I wanted to get the heck out of there.

I had to go home and tell Lewis the news. I do remember crying etc. I think I was really trying to reserve my judgement until after we went in a couple days to see the specialist. Jump to that appointment. We first go to meet with a genetics counselor who goes over different scenarios with us. We get more ultrasounds...they are seeing the same thing. One doctor makes mention that he can't locate the right leg, but it may be hiding amongst the organs. Another doctor mentions something called a limb body wall complex as it looked like some of the organs may be attached to the placenta, but he wasn't sure if that was just an illusion he was seeing with the u/s. I get the CVS testing done. It stands for chorionic villus sampling and what it does is diagnose chromosomal disorders with a 98% accuracy. Basically what is involved is they biopsy a small part of the placenta. CVS testing is usually done sooner in a pregnancy than an amnio.

Okay, so after that appointment I realy felt like I had more questions than answers and did not feel any farther ahead. They wanted to see us back in two weeks for more u/s to get a better look at the baby and he/she would be bigger and they might be able to determine what exactly was going on. Plus, the CVS testing should be back by that time.

Two weeks later we go back. We had yet to hear back regarding the CVS testing. We literally got a call from the genetics counselor a couple miles from the hospital and she gave us the good news on the phone. Our baby's chromosomes all came back normal!!! I also asked her if she was able to tell me the sex of the baby......she said it was a GIRL!!! I could not even get off the phone with her and Lewis was literally bawling from the good news. We were thanking Jesus the rest of the way there. I did know that was only part of the battle and tried not to get too carried a way with the good news as great as the news was. Our happiness soon turned to sadness when after repeated u/s's the specialist confirmed that a previous doctor's specualtion about whether the baby had a limb body wall complex was in fact true. Our baby was also missing a right leg. I had already known from doing research prior to this visit that it was "uniformly fatal," at least that is what the websites would say. So our baby has no chromosomal disorders, but she is not going to survive anyway. We went on our way.....I'm sure we were both in shock. I don't even think we spoke most of the ride home.

I guess I need to explain what a limb body wall complex is. Like an omphalocele, the abdominal organs are developing outside of the body, but they are attached to the placenta. Needless to say this somewhat resticts the baby as she does not have a long umbilical cord in which to move about the amniotic sac. Apparenlty there is no way to detach the organs from the placenta successfully. Joy also did not develop a right abdominal wall, so my understanding is there would be no place to put the organs even if they could.

As you can imagine the reality of the news did eventually settle in and it was not pretty. Let's just say there were lots of tears and a little bit of arguing. There was nothing anyone could do for our baby. Termination of course was mentioned as an option and most couples in our situation apparenlty terminate. That was never an option for me. How could we terminate our baby? She had a strong heartbeat. We could see her moving around in there. I have to admit my mind did go there and I thought it would be so much easier. I just knew I would NEVER have peace with a decision like that. Plus, I knew it was whole life I believed it to be wrong. I never did pray for this, but part of me was secretly hoping that God would just allow me to miscarry. Well if you've read any other posts you'll know that is certainly not how I feel now.


Trennia said...

I'm sorry for your loss..I loss a baby girl last year too.God bless you

ShayneandBec said...

We are going through similar atm. My partner Shayne is 32 weeks pregnant with twins. Loghan Elizabeth is a healthy girl and Jordynn Nevaeh (sex unknown) has limb body wall complex. We found out at our 20 week ultrasound that Jordy has a spinal abnormality (the spine is bent backwards in half) and clubbed feet, then 4 weeks later was told the devastating news of the LBW. We are so completly devastated, confused, sad, angry, scared... so many emotions.
Would love to chat with you about your beautiful angel baby Joy if possible. If you feel you could email that would be great...
God bless