Hannah's Legacy

My Experience with Mosaic Triploidy

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After finding out at 23 weeks gestation that my daughter, Hannah, was suffering from Mosaic Triploidy, she was stillborn on October 28, 2004.  I was frustrated by the lack of information that was available to me and searched endlessly, both online and off for answers as to what happened or any information that would tell what exactly this syndrome was.  Unfortunately, there isn’t much information out there because both triploidy and mosaic triploidy are so rare.

 

I was faced with a decision that was to both go ahead with the pregnancy and hope for the best or to terminate.  No one should ever have to make that decision.  If it was full triploidy that Hannah had, I would have had an easier decision because it is clear that she would only suffer.  However, with mosaic triploidy, no one knows what kind of life the child will have.  In Hannah’s case, she already had duodenal artresia, the bones of her skull were not developing properly, and both of her hands were paralyzed into fists so that she could not open her fingers.  There was no way of knowing if there were any developmental problems, brain damage, or other anomalies. 

 

Thinking of my daughter suffering hurt me more than anything, losing my daughter hurt even more.  I had to think if I would want to be kept alive by endless operations, tubes and machines.  My answer was no.  I went to the IWK on a Wednesday morning.  My best friend came with me because Hannah’s father hadn’t arrived yet.  The doctor said that it looked like she had already passed but I never found out for sure if it was true of if it was a way to comfort me about the decision.  They inserted a needle into my abdomen and into the umbilical cord in order to withdraw blood for testing and also inject a drug that would stop the baby’s heart so that she wouldn’t suffocate to death after birth.  I’m not sure if they injected the drug or not.  At this particular time, as I’m writing this, I don’t want to know.

 

After they finished with the last ultrasound, I was taken to another floor where I was induced.  The induction was done by putting pills next to my cervix every four hours.  Labor began around 2:30 p.m. on Wednesday afternoon. 

 

Hannah’s father had arrived about lunch time and my friend stayed with me.  Labor progressed, around nine that night, my friend left to go home for the night but was on call if I needed her.  My boyfriend had a cot next to me and we just laid there and watched T.V.  I was eventually given an I.V. and a pump that had Demerol.  I was able to control when I needed the medication by pushing a button.  That gave great relief as the contractions started getting stronger.

 

I fell asleep for a little while that night but I think it was mainly due to the painkillers.  Eventually, I felt like pushing so I called for the nurse.  I must add that the nurses at the hospital are amazing women that were a great help and a wonderful comfort.  I was having very bad pain, a lot of pressure and so I started pushing while I was in bed.  After a couple of pushes my water broke and I was moved to a birthing chair.  I pushed for about 15 more minutes and finally, at 6:12 a.m. on Thursday, October 28, 2004, my daughter, Hannah Jo-Ann Florence was born.  She weighed 14.8 ounces and was 11.5 inches long.

 

The nurses took Hannah to clean her up while the changed my bed and I got cleaned up.  They brought her back to us to hold her and say goodbye.  She was so tiny but she was beautiful, she looked just like her father.  I could see how her hands were paralyzed but other than that she looked like a normal baby born too soon.  After we said goodbye, the nurse took her to be blessed.  I never saw my daughter in person again. 

 

A local funeral home donated cremation services to us and a local artist donated a hand-made porclein urn for her.  The hospital gave us a memory box that has Hannah’s footprints, her hat and an outfit, a card from the nurses, her blessing certificate, and a few other things.  I added her ultrasound pictures and a pregnancy journal that I was keeping along with a sympathy card that I received from the Baby Building Club that I was part of.

 

I left the hospital that day.  I went to my friend’s place and came home that following Monday after I had picked up Hannah’s remains from the funeral home on Sunday.  I keep myself going by believing that Hannah was here for a reason and I believe part of that reason was for me to write this paper so that someone else could know that they aren’t the only one that had to go through this, that sometimes we make hard decisions because we love our children just like I loved and still love Hannah.

 

I have to believe that Hannah was here to help another family or possibly save another little girl’s life.  That is why I agreed to an autopsy to study what she had.  Maybe they can find something to help other families or at least help other families make that tough decision.

 

It’s okay to miss them, to love them, to hurt for them.  It’s okay to long for them, to wish for them and to hope that maybe one day we’ll find peace with it.  It’s okay to move on with life, to have and to love other children.  It is okay to talk about them constantly or not at all, to show pictures or not.  It is okay to feel and grieve in your own time.  It’s what they would want us to do.  I know in my heart that I’m doing all of her suffering now through this grieving process and in a way I’m glad that I’m the one that’s hurting and not her.

 

So, in conclusion to this, I guess what my whole point would be is that you are not alone.  Someone else knows the decisions you had to make and understands them and there will always be someone there for you to talk to. 

Helping families with a loss from Triploidy

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