Heartbreaking news

Amniocentesis Results

On Monday morning, CHEO left a message asking us to call them back. I remembered them telling us that normally if the amnio results were bad, the call would come from our family doctor so I had my hopes up the results were good. I couldn't wait to find out if it was a boy or girl, and to hear everything would be OK.

I waited patiently at home for some news. I saw Francis pull in the driveway and got nervous. Francis came in, looked at me with the most pitiful look I had ever seen and started crying. I thought for a second it was of joy. He told me things weren't OK. That the baby tested positive for Trisomy 21. It didn't make sense in my head. Our odds were good. Everything was fine up to now. We had seen the ultrasound, our bloodwork didn't seem to worry our doctor or the genetic councilor.

I called CHEO for more information. We were told the results took everyone by surprise, including the technicians and doctors who had looked at my blood work and ultrasounds thus far. We had very low chances. We were 1:110. But we were that 1. I quietly asked if I was carrying a boy or girl.

The councilor didn't seem to want to tell me. She asked me if I was sure I wanted to know. I did. A little boy, she said. I asked what the next steps were. She said we had decisions to make, and that our doctor would be the one to arrange anything should we decide to terminate.

Decision

Francis and I were a mess the rest of the day. We felt guilt and sadness and disbelief and like everything around us was falling apart. Telling our parents was immensely difficult. We knew it would break their hearts. We also knew they would be there for us no matter what our decision was, and that helped greatly.

Most of all, what made me shed tear after tear after tear was that my baby boy was sick . Parents want only the best for their children, and I suppose that was our first true experience as parents.

Francis and I talked a lot. I researched. I learned about all the physical issues associated with Down Syndrome. I read about the chances of our boy being highly functioning. I read about all the problems our child could face as a newborn, toddler and into adulthood. I read about all the wonderful examples of children and adults with Down Syndrome who have pushed their own limits and lead fulfilling lives. I read about the majority of others affected who are not as successful. I read about leukemia and early Alzheimer and all other diseases closely linked with Trisomy 21. I read about how other parents in our situation had dealt with the decision. It comforted me to know we weren't alone. It lifted some guilt to know that we were part of a very big majority (90%) who considered termination. It's not something people speak of openly. It makes people uncomfortable, and with good reason.

When people think of terminating a pregnancy with a child with Down Syndrome, they associate it with discrimination. They assume the parents terminate because they will not have a "perfect" child. That is not the case, let me assure you.

With the knowledge we needed, and with our personal experiences, we decided that terminating would be the right decision for the baby and ourselves. Admitting that brought a mixed bag of emotions.

Termination 

We met with my doctor Wednesday and informed her of our decision. I had a lot of questions about the actual termination procedure.

This is difficult to write but I feel that I owe it to all the other ladies who opened up online and helped me through this decision.

(http://www.aheartbreakingchoice.com/T21/NoRight.aspx really relates to our story).

Unfortunately, prenatal diagnosis normally happens in the second trimester, and so the pregnancy is quite far along by the time a decision can be made. When you are past a certain number of weeks, I believe it is 18, a Dilation and Evacuation (d&e) can't occur. In my case, terminating will mean induction and labour. It's exactly the same process as a full term birth but with chemical induction and the mother is given morphine to ease the pain. One of the risks is that the placenta isn't ejected along with the baby. If this happens, a curettage happens under full anesthesia.

I'm scared. I'm scared because I know being induced is painful. I'm scared to give birth without the happiness that comes with it. I'm scared to see my tiny baby boy, even for a second. I'm scared he will somehow feel pain or feel unloved. I'm scared of the recovery. I'm scared of the emotions that will happen later.

We are on a waiting list at the hospital. We were supposed to start induction this morning but we keep getting bumped because of emergencies. The wait is horrible...but we are trying to make the most of it.

Yesterday Francis and I tried to do things that bring us joy, things we wanted to share with him before he leaves us. We went for walks in the forest to look at the beautiful leaves. We rested in bed and Francis played lullabies on his acoustic guitar near my belly while I just sat there and cried. I talked to him and told him it wasn't his fault and that I was so sorry he wasn't healthy. I told him I would do everything I could so that he didn't feel pain. I would take care of him the best I could. I told him I'm not a perfect mother and this isn't a perfect world and I hoped he understood and could feel that I was being truthful. I told him I would try to live better for him...that I would learn from his brief time with me. That I don't regret having him in my life. That his life would not be in vain.

We know we will remember him always, but we would also like concrete reminders of what he has taught us. He will always be my first child. Perhaps I could plant sunflowers every year, since it was my first time doing so this year and the growth of the flowers from seed to flower coincided with his brief life. Francis would like to record his lullaby. I would like to have a special place in the forest where I can go to think of him....

Update: Termination

I was sitting updating the blog when the hospital called us in. We checked into the birthing centre at 3:30pm.

Again, this is not easy to write but I really feel it's important for me to do so...

The staff at Montfort was outstanding from the start. They showed us to our room, they explained what would happen next. A doctor came in and answered all our questions. He told us, like I had read, that 90% of people faced with our decision choose to do the same difficult choice for their child. He felt it was the right choice. He saw I was very quiet and told us we shouldn't feel guilty. I asked if anything he was going to do would hurt our baby. He said no, that a lot of research showed he would not suffer. He reassured us and was a source of great comfort. The nurse stood by and later told us she was touched by the conversation we had.

The doctor inserted the first induction pills and told us that every 4 hours I would get another dose. That I would need about 3- 4 doses before big contractions would start. That would mean 24-48 hours in the hospital.

At 8 pm, my family doctor came by and said she wasn't keen on a 48 hour estimate they gave me. She increased the dosage and inserted my second dose.

A few hours later mild cramps started and I got really big chills. I couldn't zip up my hoodie I was shaking so much. Francis tried to warm me up in my hospital bed but after they got worse we called the nurse in. We learned labour pains causes adrenalin to rise, that it happens quite often. I took a bath to help.

4 hours later, my third dose was inserted. I was given a sleeping pill because the doctors felt it was important for me to get sleep but knew it would be difficult to do so with the cramps. The cramps got progressively worse. I tried to sleep but there was just too much pain. Whatever pill they gave me didn't work. I ended up in the bathroom vomiting over and over. I was offered a gravol shot but refused it. I'm not a huge fan of needles. An hour or so later I was back in the bathroom vomiting away. Francis couldn't stand it anymore and called the nurse back in. She injected me with the gravol. I really wanted to rest at this point. 4 am was approaching and I knew the next dose was coming. Poor Francis hadn't slept yet and was at my bedside the whole time either holding my hand or playing in my hair.

The gravol didn't work. I was sick again, this time too weak to make it to the bathroom. The nurse felt it was time for the morphine. I didn't fight it. The IV insertion process is painful and in my case they had a hard time so they had to do it twice. Francis looked like he wanted to throw something when he saw the additional pain I was going through. The morphine wasn't what I expected. I felt aware and the pain was still there but it became much more bearable. I had a hard time keeping my eyes open. I was instructed to press a button anytime I felt I needed it. They explained it was not dangerous because they had programmed my max doses in the machine. I couldn't exceed my max even if I kept pressing away. I managed to sleep for an hour or so on and off. Francis slept for an hour or so as well.

At around 6am my contractions started. They startled me a bit because they felt a bit like stomach cramps. I kept moving from my bed to the bathroom. When the nurse came in around 7:45, I told her about the contractions. She checked and said she could see the baby's head so she rushed off to call the doctor. She teased me a bit for my morphine trigger finger. I had pressed 90 times but my max dosage limit had limited me to only 30-some shots. I'm a morphine junkie. Who knew...

Francis had gone to get a coffee so I texted him and told him to hurry upstairs. I was told not to push even though my instincts told me to. She prepared the bed for delivery. My doctor came in and helped me through it. Our boy was dead at birth. They cleaned him up and left us alone so we could hold him and say goodbye. I held his tiny little hand and looked down on him with as much love as any parent. I was happy to finally meet him face to face.

I needed a curettage after delivery. Normally they do it under general anesthesia but it would have meant a longer wait. The doctor suggested doing it with only morphine. I wanted to get it over with so accepted. It was painful even with morphine. Francis' hand was squished during the 15-20 minutes it took.

Because I was less than 20 weeks pregnant and he only weighed 300 grams, the legalities were simple. I asked for his body to be cremated through our local funeral home. I didn't want our boy to be treated as medical waste. I also thought it would be nice if we could spread his ashes in the forest.

The staff at Montfort gave us a memory box which contained his bracelet, hand prints and footprints. My doctor took pictures of him in his tiny little woolen hat for us. Francis got a good shot of me holding him. We left the hospital and our boy behind. It was difficult for me to walk out.

We drove home exhausted and slept for 14 hours. I cried when I woke up and instinctively touched my belly as I had done for the last 5 months. I felt empty.

We had to head to the funeral home to sign papers. I cried there too as I signed the forms as the deceased's mother.

I miss him. A lot. I miss talking to him about the world and all the great things he would see and experience. I'm sad he was sick. I'm sad I wasn't able to make it all better.

But we still feel our decision was the right one. We are happy he never suffered.

We are grateful for the support of our friends and family. It came in various forms..from emails to flowers to a freezer full of home made meals. We are very lucky.

His story doesn't end here. Neither will this blog. I intend on updating it with our healing process. I really hope this finds other mothers and couples in our situation. It is my goal to break the silence and speak truthfully about the heartbreaking decision many of us have to make.