Tuesday, May 4, 2010

Mackenzie

My daughter, Mackenzie Colleen Geyer, would be sixteen today. She was born May 4, 1994 with an extremely rare genetic condition called Trisomy 13, meaning she had three copies of chromosome 13 in each cell of her body instead of the normal two copies. This disrupts the normal course of development and causes the associated anomalies: heart defects, brain and spinal cord abnormalities, very small or underdeveloped eyes, cleft lip and cleft palate, and weak muscle tone.

I had no idea anything was amiss until I reached 26 weeks gestation and went to the emergency room with abnormal bleeding. An ultrasound revealed the abnormalities; a subsequent amniocentesis revealed the cause. Most cases of Trisomy 13 are not inerited; either the egg or the sperm ends up with an extra copy of chromosome 13 as a result of random events. And it is very rare, occurring only once in every 16,000 newborns.

Before the technician became aware of the situation, though, she revealed that the baby was female. A little girl! I had about two minutes of pure joy, contemplating the fact that I was going to have the daughter I had always wanted.

But once the diagnosis was made, I was gently encouraged to terminate the pregnancy, because even if it were to run its course, and the baby were to survive birth, she wasn't likely to live more than a few days. Only a tiny percentage of Trisomy 13 babies make it to their first birthday.

However, that was a decision I didn't believe was mine to make; I continued with the pregnancy. Instead of being put on bed rest, I was instructed to go about my normal routine. Some folks prayed for a miracle, and encouraged me to do the same; others were sure I was being punished for some horrible transgression. I did my best to ignore them. I got up every morning, put one foot in front of the other, and survived each day.

The pregnancy reached full term; I waited as long as I possibly could before going to the hospital. Unfortunately, everyone in the delivery room wasn't prepared for my daughter's birth. Some seemed shocked when they saw her. They looked at me, wondering what my reaction would be. Babies with Trisomy 13 have low birthweight, a small head with a sloping forehead, and major structural problems with the brain and skull. Their eyes are close set and underdeveloped, as are the nose and nostrils. Most have cleft lip and cleft palate. Mackenzie displayed all of these.

The first question I asked postpartum was, "Is she alive?" And she was. I didn't know whether to feel happy or sad about that. It was very strange. I wanted my baby, but I knew she didn't stand a chance.

Everything changed once I held her in my arms. I didn't want to let go. I wanted to keep that little girl forever. I would have done anything to make her healthy and whole.

We were sent home just a few hours later. Mackenzie was tiny and blue and had many physical challenges. She was unable to nurse and had to be fed with a tube. It was all rather overwhelming. My parents and my then-husband's parents came and stayed with us for the duration. Our pediatrician made house calls and hospice came to assist.

Mom and Dad with Mackenzie

My little girl touched so many people in the short time she spent on this earth. No one can tell me her life wasn't worthwhile. Yes, I suffered those last twelve weeks of the pregnancy. But I would have missed out on so much if I hadn't known Mackenzie. She was soft and warm and sweet. I hardly slept, wanting to spend every possible moment with her. Her older siblings adored her. Josh, 6, got to hold her ten times.


Josh with Mackenzie

And after a couple of days at home, she seemed to improve. She turned pink and became very peaceful. I think she must have sensed all the love that surrounded her. We fell into a routine. I didn't want it to end. But six days after she was born, she stopped breathing. Her dad and I gave her permission to go, and she left us.

Despite my fears, I made the decision to get pregnant one more time, and two years later Nathan was born, normal and healthy. For that I am eternally thankful. But I think about my daughter every day, and wonder about the young woman she would have grown up to be. Happy Birthday, Mackenzie. I love you. I miss you.

23 comments:

Anonymous said...

Pam,

What a beautiful tribute. People who only see the outside can never really understand those who value what is inside. Work for me is just not work, when I get to spend it with children who have special needs. They are the reason I still get up at 5:30 in the morning, and that I thank God every night for the gifts they give me by their presence in my life.

Anna Doll

Sallyanne said...

Wow Pam, that is touching and memorable for anyone who may read it. Happy Birthday McKenzie!

Pam said...

Anna, you are so right. Those few days with Mackenzie changed my world forever. I appreciate the work you do very much. The world needs more people like you!

Pam said...

Sallyanne, thank you so much for reading and commenting.

Carley said...

So touching, Pam, & brings back bitter-sweet memories for me, too, as tears slipped down my cheeks. So many things that have happened in this life are difficult for me to understand & this was one of them for certain. That's when I just have to step back & realize that the Master of the Universe is in control & leave all my questions for now at the foot of the cross. Someday, if we need the answers, I know our God will supply them. In the meantime, I just keep walking the "faith walk" knowing eternal happiness is promised to all that hold on even though the road is rocky & I thank God for giving us Jesus & that He was willing to give His life because of such great love for us. That is the purest love!

Pam said...

Thanks, Mom. And thanks for always being there. I love you.

Nimkee's Mum said...

~**~HAPPY HEAVENLY SWEET 16 MACKENZIE~**~ My heart is with you as you remember your sweet girl today. I too am the mother of a son that was born with Trisomy 13. We just passed his 3rd heavenly birthday. As you stated, there isn't a day that goes by that we don't remember him, and cherish the gift of unconditional love that he brought into our hearts and souls. Thank you for sharing a glimpse into a mother's heart...even after all of these years. Love, Peace, & Nimkee Blessings....Nimkee's Mum xxoo

Pam said...

Hi Nimkee's Mom,

Thank you for posting. I have never spoken with another woman who has had a Trisomy 13 baby. I hope you will keep in touch.

Blessings,
Pam

Nimkee's Mum said...

Hi Pam, I have a blog for my son Bennett-Chadlen, feel free to check it out if you'd like! I have a lot of interesting links on it, as well as the chronicles of my pregnancy, his prenatal diagnosis, through his birth, and beyond.
http://my-baby-is-an-angel.blogspot.com

I'm also on facebook along with several other men and women who have/had a child with Trisomy 13.
http://www.facebook.com/crazy.4.daizies

I'm an admin on there for the Trisomy 13/Patau Syndrome News page. If you have facebook, feel free to add me, or check it out!

I would love to keep in touch with you!

Love, Peace, & Nimkee Blessings to you and yours....Angel Smoochies for Mackenzie xxoo

Pam said...

Wow, thank you for all the information. I will add you on facebook and check out your blog. I look forward to keeping in touch with you!

janetburden said...

Pam,
I didn't know about Mackenzie until now, but what a special little girl she was! Happy birthday to your angel!

Pam said...

Thanks, Janet! I often think of her that way - as my angel.

Shawn said...

Pam,
I admire you so much, not only for giving life to a child most others would have easily choosen to do otherwise but that you shared this with us. She was just as blessed with you as her mother as you were having her as your daughter. Bless you. My heart goes out to you.

Pam said...

Thanks, Shawn. Mackenzie was truly a blessing. I wouldn't have missed those six days with her for anything.

Michele Stefanides said...

What a beautiful post, Pam. I'm so sorry for the loss of your sweet girl. It sounds like she was a bright spot in your life however short was the time she was with you.

Dave said...

Pam, Yes, cherish her memory. Perhaps... instead of living the heartbreak over again annually, remember the short time you had holding her sweetness in your arms and let her go. It breaks my heart that Mackenzie wasn't given a much of a chance, but she was meant to go on, maybe to remind us all of how short life really is. Could it be that she was an envoy, a little princess sent to represent the preciousness of life? I know she would have made a wonderful daughter and little sister with three adoring brothers, had your smile and your sweet heart. Take comfort that she is loved in heaven I'm certain, and passed around by the angels. I never knew her but I've cried for her and you. Let her go. Dave

Julee J. Adams said...

You're so strong. Know you have these precious memories and through the pain, you can have the reassurance that you do, indeed have yet another angel watching out for you.

Leslie K. said...

Thinking of you today, Pam.

Lindy said...

Speechless.

Jackie Reed said...

Pam, thank you for sharing this time and your joy and sorrow. Love you.

Alyssa said...

Thank you for sharing this. My Lily baby would have been born tomorrow, so it means so much. I'm so glad you got to hold Mackenzie. Love you!

Marilyn Baxter said...

I sold a short story about a couple whose baby had Trisomy 13. I learned about the condition when I stumbled across a couple blogs by moms of T13 babies. I'd never heard of it before, but now I have a friend whose granddaughter had it, and a local TV news anchor had a daughter with it. They used their heartbreak to start an annual fundraiser for the hospital's NICU. I cannot imagine what you went through, but I do know any child you have leaves a hand print on your heart. Hugs, sweetie.

Carol Burnside aka Annie Rayburn said...

Beautiful post. Thanks for sharing your story and hugs. Great big, heartfelt hugs.