Hope and Faith's Story

It all started in April of 2003 when I finally became pregnant after 3 1/2 years of trying. We have a 4-year old daughter. We were all very excited another baby was on the way. At my 8th week ultrasound the tech said to me, I don't know if I should tell you or wait until your husband comes in. So I said what? Is everything o.k.? She said you’re having twins. I said Nooo (all I could think of is my sister who has twins and one has autism). My husband came in and I said, "We are having twins," he didn't believe me. He kept saying “No we’re not”. The techs confirmed, “yes, you are”. He was so excited. I, on the other hand, was scared to death. I was excited but frightened because I know my sister has had a hard time with her twins.

We were scheduled for another ultrasound at 12 weeks and everything seemed ok. The tech was taking measurements and didn't say anything was wrong. I was scheduled to return for another ultrasound at 16 weeks. At 15 weeks I felt I was already 8 months pregnant. I was thinking to myself that there is no way I will make it to term with these babies unless I am on bed rest because I was huge. That weekend I felt as if I just got my period. I went to the bathroom and I was bleeding, badly. More like passing large blood clots. I screamed (thank goodness my husband was home). We went to the hospital and I was admitted. The babies were ok and they couldn’t understand why I was bleeding. I was discharged the next day. The following weekend I started bleeding again. I called the hospital and told them I was just in last weekend with the same situation, they said if the bleeding becomes heavier to come in but to call my doctor first thing Monday morning.

I called the doctor on Monday and told him what was going on. He made an appointment for us to see the fetal development department for high risk pregnancies on Monday afternoon. After the tech took some measurements the head fetal development doctor came in and told us that our babies were in trouble. They had a disease of the placenta called Twin to Twin Transfusion Syndrome. We had no ideas what she was talking about. She explained what it was and what we could do to intervene with the disease. The choices we had were to terminate the pregnancy, amnio-reductions, surgery or let nature take its course. I was not a candidate for the laser surgery since I had bleeding. I was not going to terminate the pregnancy. I wanted to do everything I could to save my babies so the amnio-reductions were the only way to go for us.

My donor baby had no amnio fluid in her sac and the recipient had too much. Since the donor baby had no fluid in the sac her membrane was covering her entire body, almost as if she was wrapped in saran wrap. We were told the reductions would need to be done to try and save them. We scheduled the first reduction for that Wednesday. I was so scared and upset. We went home and called our family to tell them of the news. My mother came up to stay with us that night. Tuesday I started bleeding really badly. I couldn't get up out of bed because the blood was pouring out of me. We called the hospital to see what we should do and they recommended we call 911. We did and ten minutes later there had to be at least 8 fire trucks outside my house and about 10 firemen and EMT's in my bedroom. There I was in my blood soaked pjs and all these men in my room, how embarrassing. They took me to the hospital and I was admitted. The babies were still doing ok. They said the bleeding was most likely my placenta. I spent that night in Labor & Delivery being monitored.

The next morning I was taken down to Fetal Diagnosis to perform the amnio-reduction. I was scared not knowing what was going to happen. My husband met me there and stood right by my side. They first did an ultrasound to make sure the babies were still ok and to figure out where they were going to insert the needle. This was the first of 10 amnio-reductions I would have. They wound up removing 1 liter of fluid from the recipient. Afterwards I had some minor contractions but they subsided an hour later. I spent the next few days in the hospital. Every 4-6 hours the nurse came in to check the heartbeats. I was finally discharged and was put on strict bed rest. I thought how in the world I am going to be able to stay in bed with a 4 year old at home. Luckily my husband’s work was flexible and let him work from home.

Every week I was scheduled for 3 ultrasounds and non stress tests. Each ultrasound determined if another amnio-reduction was necessary. Some weeks I only had to have one reduction but others I had 2. The doctors said we needed to make it to at least 20 weeks. Twenty weeks came and we were still looking good. The donor twin finally had more fluid. We thought that the amnio reductions were working. I got shots to start the babies’ lungs to develop just in case of premature delivery. The doctors said ok now we need to get to 24 weeks. At this ultrasound we found out that we were having girls. We were excited and chose the names Hope Elizabeth & Faith Anne. We felt they were the perfect names for our babies. I decided to have the recipient be called Hope and the donor called Faith.

After every reduction I felt great but after about 3 days I would start to feel bloated again. We made it to 24 weeks and I was relieved. We went for another ultrasound and the techs and doctors were having a hard time seeing the recipient’s heart. They said it was because the other twin was directly over her and was causing a reflection and they could not see it. They did Doppler readings and found some hydrops. They were starting to get concerned. At 25 weeks one of the doctors wanted to deliver me. She said go home get your things together and come back to get things started.

The doctor who told me she wanted to deliver went home for the weekend. The new doctor said that after doing the ultrasound they were not going to deliver me but keep watch on me. I was so angry because I hadn't eaten all day and they were not letting me eat just in case they had to deliver me. Needless to say I was miserable. I was discharged after days and was told I needed to come in every day again.

So every day I went in for an ultrasound followed by non-stress tests and everything looked good. Now I was at 26 weeks. The non-stress techs always had a hard time keeping the heartbeats on track. They babies were so small they kept moving but since they were able to see the hearts beating and hear them they were not too concerned. On Thursday of that week, they were having a hard time getting the heartbeats. They heard them and saw them but couldn't get them recorded. They said well we see them so everything looks ok. Friday I was to go in for a possible amnio, this would have been my 11th. When they did the ultrasound the tech looked at me and said Jenn, Hope has no heartbeat. All I could say was NO! I was in shock. No emotion. No tears. Then she went to get the Doctor. As soon as she left it hit me. I lost my little girl Hope. I screamed and cried. I could not believe all that we had done and everything looked good the day before. The doctor came in and said he was sorry. He said he wanted to deliver me right then.

I called my mom and they were on their way. They prepped me for an emergency c-section in order to save the other baby. This was the worst operation I ever had. They had to do an up and down c-section, which I feared. (My first pregnancy was the normal bikini c-section) Even though I had a spinal I still felt the pressure of them cutting and pushing and pulling. I was screaming from all the pressure. They delivered Faith and took her right to the NICU. Then they delivered Hope (stillborn). In recovery we were able to spend time with Hope. She was beautiful. She was so tiny, only weighing 1lb 12oz, and yet she was the bigger of the girls. She was my baby even though she had passed away she had only gone within the last 24 hour period. She had such long lashes and such tiny hands. I cried as I held her. My parents finally arrived and were able to hold their granddaughter. They were very sad. My dad actually cried. We had some pictures taken and they gave us a memory box to hold her gown, and hat and pictures in. We spent about 2-3 hours with her not knowing how our other baby girl was doing in NICU. I didn't want to let go. I was devastated. I finally went back to the delivery floor. I didn't get a chance to see Faith in the NICU until the next day. I had such mixed emotions, I wasn't sure if I was ready to see her. Finally I went to see her, OH MY she was so tiny. Faith weighed only 1lb 7 oz. She was so tiny. I couldn't believe it. She was all hooked up to machines.

After 4 days I went home and it felt as if it was all a nightmare. I was home with no babies to hold, to hear, or to feed. I felt as if I was robbed. I was so depressed. We made arrangements with the funeral home for Hope. We decided on just my husband and daughter at the ceremony. This was the hardest day in my entire life. I felt as if I was given the chance to have to babies for a reason but then she was taken right away from me. I know in my heart that God had a reason for giving me the opportunity to carry her and a reason for taking her from me. It still hurts. I also know that time will heal my pain and that I need to be strong for myself and my children.

I would go up every day to see Faith. She weighed only 1lb7oz at birth and went through 3 surgeries; one to close her PDA, one for stage 3 of retinopathy of her eyes and 3rd for hernia repair. After they closed her PDA she really started to do very well. We had hoped to have her home for Christmas. She wound up coming off the o2 after administering some steroids (which helped her 100%) She came home finally on January 4, 2004 weighing 5lb4oz. So far we have had great follow ups. Her eyes are doing great. She is a happy miracle baby.

Nine months later Faith is doing wonderful. She has no major neurological issues. She is around 20 pounds and loves to eat. She has been a bit colicky but I will take that. She is truly a miracle and as I see her I know Hope would look just like her. I still have some bad days but they are not horrible. Hope is always in my thoughts. There is not one day that goes by that I don’t think of her. I have a poem I found on the internet that I placed in a frame and is on my desk. The poem reads:

Every good and perfect gift

Comes from above

We were blessed with twins

To cherish and love

Born together to grow apart

One in our hands and one in our hearts

God Bless all the families that have to face this horrible disease.

Jennifer Cardello

In Memory of Hope Elizabeth 9/26/2003