Tuesday 7 January 2014

For the first time, I found that pregnancy is not really enjoyable. :( What are you going to do when doctors told that you may have a Down Syndrome child?

We are expecting and I am in the 3rd trimester already. Since the last November, there were many news that made us feel stress but I didn't want to write a blog post to share at that time since it was Christmas time.

Our due date for our 2nd baby is around the end of March 2014 and we are very excited to meet him or her!

Unfortunately, after the ultrasound the doctor said we have a high chance to have a Down Syndrome baby (80% chance) and will need a heart surgery almost right away after the baby born. It was a shock to both of us. We don't know where to start. The doctor gave us an option to get rid of our baby but this is not something that we would do to our baby. Our baby is so precious to us and we will love him/her as much as we love our daughter.
It sounds crazy that all of this started from the first ultrasound that the technician couldn't see our baby's face. She can't check if our baby has a nasal bone which is really common in Down Syndrome baby. Our doctor called us in within the next few hours to talk about this.

I went for a blood test that we first rejected to do. The result came back in a few days that I have a high type of protein that common in a pregnancy with Down Syndrome baby. But also this result can happen in normal pregnancy as well. Anyway, the high protein, make my risk of having a Down Syndrome baby to 1 in 30 which is also can translate to 2-3 % chance of having a DS baby. That doesn't sound too risky but normally woman has a chance of having a DS in 1 in 600 I think. Now, yeah, I can see the different.

We were a little stress but we think it will be ok. Even though it is higher chance but the percentage still doesn't sounds that bad.

2 weeks after that they sent us to Surrey for another ultrasound. The doctor said our baby look perfect except only 1 thing that she is not too sure because our baby doesn't move to the right position for her. But she think she saw a hole in our baby's heart.

I asked if she find the nasal bone. She said yes but it doesn't matter. Some DS baby also has nasal bone. (So what's the point that drive us this far for all these check up if the nasal is not a problem since it start!)

Now it's not only a Down Syndrome that stress us but also a hole in the heart?! What's going with my baby? How can this happen to us? I never thought we have a chance to have all of this happen to us at all.

Within 2 days, they sent us to Vancouver for another ultrasound check up. I started to hate these ultrasound process. Every time it takes so long, almost an hour. I started to think what else that we can harm our baby. I started to think that ultrasound is not really healthy to our little one anymore.

And yes, after about 1 hour of the ultrasound  check up, they confirmed that our baby has a hole in the heart. Plus this symptom is very common  in Down Syndrome baby. They also mentioned that the baby's head looks a little round, the femer bone is a little short which all this could be a symptom of Down Syndrome baby as well. (But it is also can happen in a normal case as well since I am Thai. I am short. I don't really have a bridge on my nose!) But all of these symptom they found, they jacked my risk of having a Down Syndrome baby up to 80%! Seriously from 3% to 80%?!!

I broke down at the hospital. We still have to stay there, talking to a few more doctors. I am so stress and worry. I couldn't help. I admitted that I am worry about our baby. I started to think about how can I do. How am I going to potty training this baby? How am I going to teach him or her? The doctor said they have a shorter life. Do I one day have to burry my baby? What did I do wrong? My stupid rotten egg caused all this? Why have to be this egg? I started to think more and more and started to blame myself.

We talked to genetic doctor in the afternoon. We asked a lot of questions about Down Syndrome baby and symptom that they might have. They were encouraged us by saying that it doesn't mean we have a Down Syndrome baby. We just have a high chance. We still have 20% to hope for!

The last doctor we met, wasn't really encourage us. She wants us to do the amniocentesis test to find out. Because it is 99.99% so that we know for sure if our baby has Down Syndrome or not. And the risk of losing the baby from this test is only 0.5%. We were convinced. But I was curious about why we have to do it today? Why do we have to rush to have this test done so quick. After I talked to my husband and the doctor again, I realized that they want us to have this test done so quick before I am at 24 weeks because the baby is too small. If something happened after the test, the baby won't have a chance to survive. So that the doctors won't be stress! Are you serious? You just told me that it is only 0.5% chance of this could happen. But the doctors themselves don't want to take a chance if it does happen? So they don't have to worry about saving our baby's life?

So we decided not to have to test done. After we told our doctor that we won't have it done, she said to us " You know that you have a high chance of Down Syndrome baby right? All the symptom you have, it will be too much of a coincidence if you are not going to have a Down Syndrome child."

Well, thank you so much for the confirmation after we decided not to have a test done. That was our last conversation at the hospital. I kind of disappointed to this doctor.

I was stress, upset and many more. I just don't know how to explain to words. But everyday I feel better. I was encourage by many people around us. We have so many people shared with us their stories about how God's miraculous heal their babies. We also have a lot of support from many friends. Some trying to connect us to the community that helping with specially need kids. Some encourage us by connecting us to friends that have DS child. 

We want to keep our family activities adventurous and fun for both of our kids. Even though the new coming baby have a high chance of Down Syndrome and will need a heart surgery for sure but we will not give up and let he/she down. We would love to teach him/her as much as we can. Let him or her experience life as much as he/she could.

We are now praying for a miraculous healing from our God. And this have been giving me hope since the last month. I know and believe that our God is great and can chance our baby's health issues if it is His will.

2 comments:

  1. I'm so sorry you are going through this. I pray that things will go well and that you have people to support you through it.

    ReplyDelete

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