Friday, February 29, 2008

Email to Friends and Family

We are proud to announce that we found out today that we are having a new baby boy!

However, we were hit with some bad news. After an abnormal blood test, 2 abnormal ultrasounds, and an abnormal amnio, we have been told that our little son has Trisomy 18 (Edwards Syndrome). T18 is a fatal diagnosis. (Trisomy 21 is Downs Syndrome; T18 is much rarer and more severe.)

Many of you may have the desire to begin praying for a miracle. Sadly, our little boy is too sick to survive. Very rarely infants with T18 can live months or even years. With what has been discovered during the ultrasounds, our little one would require a couple of major surgeries right after delivery. Because T18 is a fatal diagnosis doctors will not do any surgical intervention. We have been told that our son has a 90% chance of getting his “wings” before he enters this world. If he lives through delivery, we may have a few minutes, hours, or possibly days with him.

We have made the decision not to interrupt this pregnancy. We will enjoy every day that God chooses to bless us with him. We are 18 weeks along now; and are beginning to understand that this may be a very short pregnancy or may continue until we are due in the beginning of August.

We have already begun discussing this with our children. We have told them that God is using us to make a new angel. That their new brother is very sick and will not come home to live with us. That he will be living in Heaven with God and that their Great Grandma will help take good care of him. They have lots of questions.

Please pray that we have the wisdom to do what is best for our new son, and our growing children. Pray that God will give us strength to get through all our hard days and enjoy the good ones.

Attached is a link to the T18 foundation web site.

In his Grace,

The Currey Family

Final result

We have the final amnio result. It is confirmed Trisomy 18... and a Boy.

Carole from Dr Dashow's office called at about 10:00 this morning. She gave me the final results and asked if I had any questions. At this time we didn't have any questions for her but we plan to see her early next week.

I had a hard time...I just wept. I think it was finding out that we are having a son. It makes him more real somehow.

I called Kevin at work knowing that he was as anxious for the results as I was. I could hear from his voice that it was a hard moment for him as well.

We will be sending out an email to our friends and family tonight.

Thursday, February 28, 2008

Telling our children

We decided to tell our kids today. They already know something is wrong because I am spending so much time crying. Since we didn't know when our baby would pass, possibly as soon as today or tomorrow, we wanted them to start having time to process the information.

The problem is how and what do we tell a 6 year old and 3 year old (since our 1 year old is too young to understand). We don't even have the answers that we need to comprehend this, and we are going to try to ask our small children to understand?

Emma has been asking every day(multiple times a day) for the last several weeks when she will be able to hold our new baby. Austin frequently asks when the baby is coming home. We know that this is going to be hard on them. We have been praying for them to be able to cope. We have also been praying for God to guide us in what information to share and when we should expand and tell them more.

We sat down with them and told them that their brother or sister is very, very, sick. That God is going to make it an angel and take him/her to heaven to grow up there. Their only question right now is why. The only answer that we could come up with is that God made this baby very special and he wants it to live with him. They don't understand (nor do we expect them too) and we just continue to tell them that their baby is very special and will go to heaven someday. We told them that we don't know when; they might be able to hold it and love it for a while, or it might become an angel before they are able to meet it. They don't like this. Neither do we.

Wednesday, February 27, 2008


I wasn't able to sleep at all last night. After several people asked me if we would consider termination, the thought wouldn't leave my mind. I don't know what the "right" decision is. How do you even make a decision like that? The questions kept coming into my mind. Would we be saving our baby from a life of pain and suffering? Would it be easier on our children? Could I even live with myself? What would our "Christian" family and friends think? Is it against God? I cried almost all night.

Morning came. Sometimes when tragedy strikes you think time should stand still. But it doesn't. I am still mom and have work to do. I had to get Austin ready to go to school, get breakfast and get Emma and Kadin ready for the day. We decided not to tell the kids that the baby is sick yet. We want to get as much information as possible first. Grandma is coming to the house to watch Emma and Kadin for us.

Karen called this morning to check on me and I was able to discuss my night with her. She didn't judge me for my thoughts or fears. She didn't try to make the decision for me or persuade me into a particular decision. She was just a comforting friend. She told me that she would support us and help with any decision we made.

On the way to the appointment this morning Kevin and I had a great opportunity to talk. He told me that he didn't want to end this pregnancy. He loved and trusted God and he knows that this baby was meant to be. I felt so relieved. I knew instantly that we made the "right" decision for us. We also decided that we would have an amnio done. Even though we know that we are in this for the long haul we need as much information as possible so that we can make informed medical decisions.

We started the appointment with a level 3 ultrasound. We told the tech that we already know that there are a lot of problems with baby and asked him to tell and show us as much as he can. He showed us our baby's VSD and omphalocele. We loved seeing our baby again. To us it looked like a normal healthy baby. It was active and seemed to be doing well. Of course it wouldn't cooperate and turned so they couldn't tell us if it is a boy or girl!

During the ultrasound a nurse practitioner and councilor, Carole, came in to talk to us. She asked how we were doing and talked to us about our children. It felt wonderful to discuss my feelings with her. She told us that when we tell our kids we needed to be sure to tell them that even though their brother or sister is very sick, I am healthy. What great advise. I didn't even think that they might get scared about my health.

Next we had a consult with Dr Dashow. He told us that our baby has several problems that are a major concern. He has a large VSD with his heart at a 70 degree angle, a small omphalocele, and problems in the brain that might include a dandy walker malformation. He also told us that baby has some other minor problems. A 2 vessel cord, it is small at the 11th percentile, and some measurements are off. Baby weighs 5 ounces today.

He explained that it is very likely that our baby has Trisomy 18. The only way to accurately diagnose T18 is with an amnio. If it is T18, our baby has a 90% chance he will pass before he is born. If he lives through delivery he might live minutes, weeks, or months. Unfortunately no physician will be able to give us an accurate estimation of his life on earth.

Then it was time for the amnio. I was a little scared and Kevin was great. He held my hand and spent time talking to me. I was thrilled because it was quick and not very painful, in fact, it hurt less then a normal injection. They told us that we could have preliminary results ( FISH results) in 3 days. Although the FISH is not the final result, it is very accurate.

Now we have to wait. We know that our child is very sick. Regardless of the amnio results he/she will never be a normal healthy child. The problems with the heart and stomach might be able to be corrected surgically but his/her brain is not normal and will not be able to be fixed.

We are spending time in prayer. But we don't know what to pray for. We know that God has given us a very special child. One that we love as much as our others. Should we be praying for life...because, of course, we want our baby with us. But that feels selfish because we want our baby to be able to enjoy life...not just have it. Do we pray for the end of its life...?? How do you pray for the end???

Mostly we are praying for Gods will to be done not ours. He knows what the outcome will be even if we don't. Right now we need his for strength to get us through the days to come. We take comfort in knowing that he will be carrying us through this entire journey and will do what is right for us.

Tuesday, February 26, 2008

First Formal Ultrasound

Fear. That is all I felt all morning. I found myself in tears and but we didn't even know if anything was wrong yet. I couldn't shake that fear.

Our ultrasound went well. Tanya has done the ultrasounds for all of our children and knows us well. The first thing she told us is that she will not be able to tell us anything...good or bad. She was wonderful during the entire exam. She showed us pictures of our little baby. It was kicking and rolling around. Tanya kept us talking and laughing the entire time.

After the ultrasound Tanya asked us to wait in an exam room for our routine check up and told us that Patra would be with us in a minute. I knew instantly that there was a problem when it was Dr Shope that came in a minute later.

He explained that there are multiple problems on the ultrasound. He said that there are problems with our baby's stomach, brain, heart and measurements. He told us that we might want to consider termination. I instantly told him that is not an option. He agreed to send us to a specialist and would call us with the appointment.

We left in tears with an unsure future and a very sick baby.

We went back to Karen's house to pick up our other children. We, of course, told her what Dr. Shope had just told us. She just hugged me and cried with me. She is such a blessing for me right now. While we were at her house Petra called and told us that we have an appointment with a parinatologist, Dr Dashaw, tomorrow.

It is going to be a very long night.

Monday, February 25, 2008

The Phone Call

I received a call from Petra (my nurse) today. She told me that my blood work is "off" and I need to come into the office for an ultrasound to confirm dates. Being a nurse, I know that she means my Prenatal Risk Screen came back positive. My first question...what did I screen positive for? She says that it came back elevated for Trisomy 18. My second high? 1 in 10.

I did several ultrasounds at work and I am confidant that my dates are correct. But I feel myself hoping that I made a mistake and my dates are off causing a faults positive result. I am scheduled for an ultrasound tomorrow at 1:00. Kevin and I plan on taking the kids to our wonderful friend (Karen) during the ultrasound in case we find out that everything is not going well.

Friday, February 15, 2008

The Begining of our Journey

On December 5, 2007 we were blessed with our positive pregnancy test! When I told Kevin we both began laughing. 4 children! Were we crazy? Even though we were thrilled by the thought of our 4th "planned" child we were also a little nervous. Right now we have a 6 year old (Austin), almost 3 year old (Emma), and 1 year old (Kadin). WOW!

Since I am a nurse and work in an OB/GYN office I had the opportunity to do several ultrasounds to confirm dates and check growth. Everything looked great and we began planning on our new arrival around August 2, 2008.

On Christmas day we announced to our family by giving an ultrasound picture to my Mother as a gift. It was a wonderful Christmas fill with many presents and tons of joy.

The days and weeks went by. I had mild first trimester nausea, which was a little unusual for me. We felt blessed because in the in the past I have had a lot of nausea and vomiting with my pregnancies.

We started telling our close friends when we were 10 weeks. We had made the decision not to tell our children for a while because 9 months is a long time for them to wait. We hoped to tell them when I started showing so they could enjoy the fun with us. However, one friend was very excited for us and Austin overheard her talking about it (Thanks Tani!). He came right up to me with eyes the size of silver dollars..."Mom, are WE going to have another BABY!?". It was a wonderful way for him to find out! He was so excited that he couldn't even talk for a couple of minutes. Then he spilled the beans to his sister. It was all over. They told everyone!

I went to my first OB appointment with Dr. Shope on Feburary 19th. I was 16 weeks pregnant. I wasn't feeling fetal movement yet (again a little unusual) but we heard the heart on Doppler and felt that everything was going well. While at that visit, they did all the prenatal blood work, including the prenatal risk screen.