I’ve been keeping this blog a few weeks behind “real time” regarding our baby. I was late in announcing our pregnancy (in the blog) and so I’ve had one set of updates on the blog and one set of (real time) updates on my personal facebook page. Now I’m going to try and just get the two in sync.
Here’s a quick catch up for my blog friends:
When I was 12 weeks (four weeks ago) I went in for an ultrasound to do a screening for Down’s Syndrome. Basically they measure the back of the baby’s neck, give you a blood test, and then give you a percentage for your child’s risk. During that ultrasound we saw the baby moving, stretching, and we believed everything was just fine.
That next week I went in to see my midwife for my usual 4 week check-up, and to get the results of the Down’s Syndrome test. Dave works at the same clinic my midwife is in, so he’d been able to come to all my appointments. However, he wasn’t going to come to this particular one. So when he showed up with the midwife (because she had called him and asked him to come in) I had my first suspicion that something was wrong.
She told us that the ultrasound had shown some abnormalities in the baby’s brain and face. She said the ultrasound wasn’t conclusive and that we’d need to go in for another ultrasound in two weeks and see a high risk pregnancy doctor. Of course we were completely devastated, but since there were no conclusive results I still had great hope that everything would be fine.
I shared the news with friends and family so they could be praying for our baby, and the two weeks waiting for the next ultrasound were filled with so much peace! I know it was the peace that only comes from God. I am not an emotionally strong person at all! I cry at the smallest things, especially now that I’m pregnant! However, I only cried twice during those two weeks, and I was able to tell people without getting choked up. That my friends is strength that only comes from the Lord!
And here’s where we are now:
This past Thursday we went in for the second ultrasound. Again we saw our baby alive, kicking, moving, and even hiccupping! They were doing a full anatomy scan, which is usually done after 20 weeks, so the ultrasound technician was looking at all parts of the baby. Our tech actually called her supervisor in to do the ultrasound, which freaked me out initially, but I think she might have just been new. As the supervisor saw the various parts of the body she would point them out to the other ultrasound technician so I got to hear snippets of “this is the foot bone”, “this is the spine”, “the spine looks good”, etc. I was so hopeful that everything was going to be just fine. Then I heard her say that they could not see a nasal bone. That was one of the things they had told us after the 12 week ultrasound, and one thing I had been praying for specifically. I also heard her say “cleft lip.” I didn’t hear her say anything about the brain, but she seemed to mention good things about the heart and the kidneys.
When we left the ultrasound I was saddened to hear our baby might have a cleft lip and perhaps a nasal deformity, but those are cosmetic things that can be fixed.
The next day (yesterday) we went in to hear the results from the ultrasound from the high risk pregnancy doctor. Unfortunately it took the doctor 2 hours to show up, so first we met with a resident. She had results from the ultrasound on a piece of paper and quickly rattled off the good things they saw and the bad. She said they weren’t able to see the nasal bone, and they also saw that the occipital lobe (the rear part of the brain) hadn’t filled out, which is a condition called holoprosencephaly. She said these are all markers for a chromosomal disorder. However she said that ultrasounds always have a margin of error and are not conclusive, only an amniocentesis would tell us 100% if there is a chromosomal problem. For me that was encouraging news.
She then went on to tell us that we would first need to decide if we want to keep the baby if there is a defect. I told her that we do want to keep the baby no matter what. She quickly responded telling me that we shouldn’t decide that so quickly and need to make an informed decision. She said that we wouldn’t want to bring a child in this world and make them suffer. This made me so angry! I felt like she was trying to guilt me into aborting a child that we don’t even know is sick. And regardless of whether the baby is or not, we will love it as long as God allows it to live.
So, we left the exam room and went to the waiting room to wait for an hour and a half. It was such an excruciating wait! Each minute that passed I seemed to get more and more nervous. I kept praying over and over for the Lord to give me peace and to heal our baby.
Finally the doctor showed up and we went in to see him. He pulled up the images from our ultrasound and told us he would go through each image and explain their concerns. I remember him saying “a picture is worth a thousand words” and then he began with the brain.
There it was, right in front of me. A picture of my precious baby’s brain, with a large part of the back completely black. He said they whole skull should be filled with brain matter, but the back part was just fluid. It was one thing for them to tell me this with a lab report in hand. It was another to see it for myself. I was absolutely devastated. Image after image he showed us of the brain, the same thing.
Then he showed us some profile shots of the baby’s face and the flat characteristic of the profile. You couldn’t see the silhouette of a nasal bone at all.
He told us that all these markers point to what is called trisomy-13. It is similar to trisomy-21, or Down’s Syndrome, except the extra chromosome is at the 13th pair. He said that out of the three trisomy disorders (trisomy-13, trisomy-18, and trisomy-21) that trisomy-13 was by far the most severe and devastating. He said that infants born with this suffer from severe facial defects, limited motor capabilities, and most die within their first year of life. He said even then most of their life is spend in a vegetative state.
At this point I couldn’t keep my emotions any longer—I just began to weep. I just kept thinking about my sweet baby and the possibility that I’d never get to hold it alive at all. I thought about how my baby will never be able to call me “mommy” or learn to walk.
He again reiterated that ultrasounds cannot be conclusive, but based on what he saw he gave us an 80% chance that the baby does in fact have trisomy-13.
Since we won’t terminate the pregnancy no matter the circumstance, he told us there really is no point in getting the amniocentesis unless we want it for our own peace of mind. We have decided not to get the amnio since it puts me and the baby at unnecessary risk and the results won’t change our decision to keep the baby and love it. Instead we’re going to continue on with the pregnancy praying for a miracle, asking God to prepare us to be good parents for the type of baby He has planned for us to have.
I know He has a sovereign plan for our lives and for this precious baby’s life. Although I don’t understand why this is happening to us, I have to believe that it will ultimately bring Him glory and will bring us closer to Him. I also believe that He will give us enough grace for each day and for each situation that comes up. That’s really all I can cling to right now.
So my dear friends I ask that you pray. Pray for our dear sweet baby. Pray that God will heal the baby. And if it’s not His will to heal the baby completely, pray that the baby will have a milder form of trisomy-13. There are children with trisomy-13 who live well past the age of 1! Please pray for Dave and I that we will have strength to endure the remainder of the pregnancy with faith and hope. Also pray for us this week specifically since we have to say goodbye to our beloved dog Lily and give her to her new owner.
I’ll be honest—at times I feel I’m at the bottom of a mountain and there is an emotional avalanche collapsing on me. Between getting ready to move to another country, having to give up our dog, and now facing the challenges with our baby I think I can’t handle it all. But then there’s always the still small voice of Jesus whispering to me “You’re not alone. I’m here with you and I love you.”
It’s truly only the love of Christ that will get us through this!