Making My Decision

Posted on Posted in Stories, Trisomy 21 (Down syndrome)

Anonymous Mom

Making My Decision
I love my little boy so much and prayed for him so hard, how can I find peace that I am doing the right thing?

I want to thank everyone who has shared stories here. This is the first and only location I have found that shares stories of good, loving and truly caring people who have made the incredibly hard decision to end a wanted pregnancy. Unlike many women in your stories, I do not have any children and now I probably never will.

This pregnancy was our third attempt at in vitro fertilization. The first two times did not work, so you can imagine the excitement when they told me the pregnancy test was positive. However, I was too concerned from the first day to get excited and be happy. I told myself I would not get attached until the baby arrived. Well, I am sure you can guess where this is going to go.

In the fourth week of this pregnancy I got the first sign there was a problem. The HCG levels did not double like they are supposed to. The in vitro nurse tried to sooth me by reminding me that they had implanted three embryos and that if they all did not take, that could be part of the problem with the HCG level. It made sense, so I bought into it. My husband assured me I was just overly concerned.

Then two weeks later I started bleeding. I was sure I had miscarried. I contacted my doctor and they said I shouldn’t worry, but should come in for an ultrasound. Much to my surprise, the baby was still there. I felt I was blessed, and that this was what God wanted.

Shortly afterwards I noticed dried blood coming out with the vaginal insert I had for progesterone. I thought here we go, this is it, and went for another ultrasound. Again the baby was fine, but they found a subchorionic bleed which must have been causing the blood I was seeing.

The bleeding had stopped and things were finally looking up. I counted the days until my first trimester would be over. My doctor suggested I have an ultrasound screening for Down syndrome instead of risking an amnio. The results of that ultrasound weren’t great. They gave us a 4% chance that the baby had Down syndrome, which was four times higher than the 1% risk I should have had for my age (39). Still, I thought, hey, a 4% chance for Down syndrome means a 96% chance the baby will be fine. This is great news.

The perinatologist said to be on the safe side we should have a second ultrasound, since that was a non-invasive way to get a better picture of my baby’s health. I went in for it on the first day of my 16th week I did. This was with a different doctor. He found two soft markers for Down syndrome: the nuchal fold measurment was 6 (anything over 5 is a concern). This doctor seemed certain my baby had Down syndrome, even though he said the soft markers technically only raised our risk by another 5%.

I was scared and angry. How could he make such a call? Did my baby actually have Down syndrome or not?

I had waited my whole life for a child. Why would God be so cruel and give me a sickly baby? This doctor recommended I get the amnio so we could find out for sure whether the baby had Down syndrome. I didn’t want to do it; I was scared to death. I felt that if I did it there would be complications and I would risk losing my baby. My husband felt very strongly that we should get it, and said he would feel better if we did. In the end, I went through with the amnio.

I was mortified. I guess I knew in the back of my mind that the results would come back positive, and then what was I going to do?

The day after the test, I had terrible cramps and went to see my doctor. Everything checked out. There was no bleeding, no funneling of the amniotic fluid and I did not have a fever. Now, I just needed the results of the test.

The second day after the amnio the doctor called me with the FISH results and said three of the five Down syndrome markers they look for had showed up. It was conclusive the baby has Down syndrome.

I wanted to test again. I needed to make sure it was my amniotic fluid. He confirmed it all, and said another test would not do any good. I checked with three other doctors and they all said the same thing.

So now, here I sit trying to schedule appointments with a spiritual adviser, a genetics counselor, a mental health counselor, anyone who will tell me I am not a bad person if I terminate this pregnancy, that God will not hate me if I let this baby go. I am so afraid. I love my little boy so much and prayed for him so hard, how can I find peace that I am doing the right thing?

I still have a few days to decide, but I know the direction I am headed. My husband is the best thing in my life and he is so scared of the unknown and the difficulties involved with a Down syndrome baby. And you can never know the severity until they get here. I am 39 years old, who will take care of my baby when I am old? I have no other children to help, I have no one to bear that burden in my absence.

 

Ending a Wanted Pregnancy Answers

We are so sorry to hear that you are facing this most difficult decision. Only you and your husband can decide what is right for your family. It must be especially hard for you, having gone through so much with your infertility treatments.

Let me assure you that your concerns about having a child with Down syndrome are valid. It is not for everyone, and most people who get a prenatal diagnosis of Down syndrome do end the pregnancy. However, there are people who decide to continue and that is a valid choice too. As you make your decision, please talk to a genetic counselor who can give you an accurate picture of what Down syndrome entails so that you are making your decision based on facts rather than fears. Another good resource for anyone in the throes of decision making is Backline, an all-options pregnancy resource center with trained counselors.

If you do decide to end the pregnancy, it will be important to your healing to know that you’ve carefully considered all of your options. And of course Ending a Wanted Pregnancy will be here for you. If you choose to continue the pregnancy, we can send you links to several resources for mothers in your situation.

 

 

 

photo credit: These Burdens via photopin (license)