Monday, October 11, 2010


Alison
Mom to Mutalah
December 27th, 2009
Calgary, Alberta, Canada

In September 2009, I was so thrilled to find out I was pregnant... 

On the December 7th, 2009, I went for my 18 week ultrasound and the technician said that they suspect a problem with the baby's heart.  She couldn't see the "hockey sticks" but they were not able to say anything else, I would have to wait to hear from my doctor.  The next day, my Dr's office called and asked me to come in for an appointment that day...  They said that they believe that the baby's heart is not developing properly and referred our case urgently to the Fetal Medicine Clinic here in Calgary.  I went for another ultrasound and a fetal ECG on December 16th and we were given the news what the little heart is in really bad shape - the left side is seriously under-developed.  They said it was a congenital heart defect known as Hypoplastic Left Heart Syndrome and in addition, the baby only had a two vessel umbilical cord which is often an indicator of other issues..
 
We were given a few options: 1) have the baby and then, if it was strong enough, it would have a minimum of three surgeries and potentially a heart transplant. The surgeries would not be a cure for the problem but rather a "fix". Since they have only been doing these procedures for about 15 years, they have no way of knowing what the long-term outcomes are... 2) have the baby and opt for compassionate care - this means having the baby and allowing nature to take its course without surgery (just pain management) or, 3) to let the baby go now...
 
We had to make the decision immediately because we only had until the baby was around 22 weeks gestation and then our options were more limited.  It was one of the most difficult decisions of our life and in the same breath, both my family and I came to a decision to choose the last option.  It was really scary and really devastating, but we believe that it was best for the little one and best for us.  The thought of bringing a baby into the world that only knows pain and restrictions (if it makes it) did not sound like a path we wanted to travel along...  I felt like my heart was breaking into a million pieces as we waited for a call from the hospital to say that they had a bed for me.

The 22nd and 23rd passed without a call.  The waiting was excruciating.  On the 24th, I managed to get in touch with the labour and delivery ward and the nurse told me that she did not think that I would get in before Christmas and that she did not want to have me come in on Christmas Day.  She said to go and spend Christmas with family and friends and to call on the 26th.

Christmas was surprisingly good.  It was not easy to keep a smile on my face, and the 15 or so at dinner knew what was going on - a huge elephant in the room.  Nobody could or wanted to speak about what was about to happen.  There were children at the dinner who wanted to play and I did my best to entertain them, but all the while my heart, in a million little pieces, was with my little baby.

On the morning of the 26th, I got the call to come into the hospital.  It was the longest one hour drive I have ever made.  It was as if time had slowed down.  We got to the hospital and I was shown a private room.  I felt like I was outside myself.  The doctor came in an explained the process and we got the induction started.  I was joined by my partner, my mom and my sister for the first day and my dad joined us the next day.  I was uncomfortable, but my nurses were liberal with the morphine.  Throughout the night and into the next day, it seemed that I was making little progress with labour.  The morning of the 27th, they decided to start me on an drip to make things speed along.  I had always said that I did not want an epidural, but when that pain started, my nurse told me that I should consider one - why make something so horribly painful even worse by adding physical pain.  I agreed.

At 5:40p.m. on December 27th, our baby boy, Mutalah, was born.  At 395 grams and 24.5 cms, he was perfect in everyway... except that he only had half of a heart.  Completely viable in the womb but not on the outside.  The nurses brought him in to us and we had a chance to look at him.  I told him I loved him and that more than anything, I was sorry.  I left the hospital that night feeling empty... There's a hole there - in my heart.

The next few days were a blur of logistics - what did we want to do with him?  I was overwhelmed with the fact that I had not looked at his little hands and feet.  The funeral home that was helping us arranged for me to see him one last time.  I held him and looked at those tiny hands and feet - 10 fingers, 10 toes... only 1/2 a heart.  I made my peace with him, held him, reminded him that I love him and let him go.

He was eventually buried in a cemetery outside of the city we live in.  It was not my choice, but his father needed to do that, just like I needed to see those little toes and fingers.  My heart is still in pieces, but maybe not a million any more...  

I felt like my body was betraying me.  Not only did I lose my first son, I started lactating.  It was like mother nature was playing a cruel joke on me, but biology is incredible and wonderful and heartbreaking.  The pain was intense and frustrating.  But that went away... and the bleeding stopped.... and MY heart kept beating.

Every time I have a spare moment, my mind wanders and I find myself thinking about Mutalah. 

My baby, my son,  I love you.

And to my family, friends, nurses and doctors, thank you for your care, your compassion, your love.  I don't know what I would have done without you.

You can contact Alison at alisoncasey2003@yahoo.ca

3 comments:

jehecomfort said...

Alison, you are a brave, compassionate and truly exceptional person. The courage you show in sharing this deeply personal story will no doubt help others who face this kind of loss. I hope some day you will have the chance to be the wonderful mother with a heart big enough to withstand any trial that you have shown yourself to be. Love, love, love.

Alice said...

Oh my. I have just read your story. And all I can say is, yes your heart kept beating and that there has to be a very good reason for that. Your strength and endurance is inspirational.
Love, Alice

- B. said...

Alison, you are so strong - for having been challenged with this, for making it through, and for sharing your journey. Your daily inspiration quotes are always a pick-me-up.

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