When What Seems Broken is Perfect: The Mother of a Disabled Child Tells her Story

LifeSiteNews ^ | 7/20/06 | Anonymous

[wagglebee]

(Note: A mother known to LifeSiteNews.com, and who would like to remain anonymous, wrote the following article in response to an op-ed that appeared in the Globe and Mail. That op-ed was written by a mother, calling her self C. Smyth, who told how she chose to abort her unborn child because the baby suffered from a chromosomal disorder. “Isn't it more cruel to bring a child burdened with so many disadvantages into the world?” Smyth wrote.)

July 20, 2006 (LifeSiteNews.com) - The graph is still taped to the inside of my kitchen cupboard, pencil on a string dangling down beside it. It depicts the progression of my newborn daughter’s weight, most days showing a moderate increase, and thus reflects a thriving child. It ends abruptly at 80 days.

Recently, C. Smyth shared her agonizing and very personal decision to terminate a pregnancy after testing revealed a severely disabled child.

My husband and I were faced with a similar difficult decision. We too were in our 40’s, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us.

We first heard of our daughter’s genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don’t make it to birth and those that do live a few years and are severely disabled. I thought, “Well, what is the point of that life?”

When the geneticist uttered the dreaded words, “your daughter has trisomy 13,” and it was a diagnosis about my baby and not someone else’s, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie.

After the diagnosis, the research began. It was frantic, and went long into the night for months. I researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child’s life. They knew with certainty that the gift of that life was not theirs to keep. The children, called “survivors” were blissfully happy and progressed developmentally, albeit slowly. It became increasingly clear to us that unless the medical intervention to provide life was excessive, Annie was better off alive than dead.

We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn’t master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie’s care and needs into our busy schedule? We had 5 soccer teams in the summer!   We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward.

Annie was born full term, crying.  She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia.  Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely.

We knew the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie’s developmental progress and bought “mind stimulating” music and ordered her a “Bumbo seat” to help develop strength.

The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games.

At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry.

Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children’s hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later.

There are two ironies to this story.

The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective “Do not resuscitate” was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing.

The hospital issued a letter of apology stating that sometimes “… communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry.” Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn’t seem to be an option.

During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them, just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable.

The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all.

[Iwo Jima]

I know a woman who gave birth prematurely, did resist the pressure which you spoke about, but care was withheld from her baby anyway. When the baby was born, they told the family that she lived only moments after birth which was false. They put the baby in a storage closet (it appears from the picture which a nurse took and gave the family). After two hours with no care the baby died.

The family found this out when they ordered the medical records. There was no baby's chart. The hospital just made one up out of copies of documents in the mother's chart.

After asking around, I could not find one neonatal nurse or neonataologist to say that there was anything wrong or unusual about this situation. "That's just what we do" is what I was told over and over again.

If you were ever told that your baby died at birth, you should demand to see the medical records. Most likely they lived longer than you were told and died later -- alone, without care, and without ever even being held.

[Gerish]

Inspirational story - truly touching. Where are my Kleenex?

[NYer]

Thank you for posting your son's story. And to think that in Great Britain, pregnant women are aborting babies with cleft palates and other 'fixable' problems. How long before gov't mandates that only healthy children be allowed to be born.

[floriduh voter]

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[sig226]

We will never know who God wanted to put into our lives, and why, if we refuse the opportunity.

[Marie]

I know what the effect is . . . their older child knows that if he somehow becomes "not perfect" - disabled or critically injured in an accident - his parents may kill him.

For the first 2 years after my son was diagnosed with T1 diabetes he was very "brittle". No matter what was done, how careful we all were, his blood sugars just continued to spike. For months I was in daily contact with his endocrinologist and CDE, sometimes going over his numbers on a ten minute basis. He required round-the-clock monitoring and I was the only one to do it.

Homeschooling was just not working, but we couldn't send him to school. So my daughter went. I decided that her education shouldn't be put on the back burner because her brother was sick.

I was no fun. I was exhausted all the time and it was all I could do to keep up with him and the house. One night I had some rare alone time with my daughter and I took the opportunity to apologize. I apologized for not giving her enough attention and for not being as available to her as I had been. I apologized for no longer having the energy to take her anywhere and for the situation in general. I admitted that it wasn't fair, but also admitted that I didn't know how else to manage the situation.

And she hugged me and comforted me and said that she was fine with the whole thing. She told me that I all this drama actually made her feel safer. "If I'm ever sick or in trouble I know you'll do the same thing for me. I know that you'll be there for me, just like you are for him." This fall she's having surgury to correct a minor birth defect and she's not worried at all. She is secure.

Now he's leveled off (for the most part) and life has returned to normal. And she learned that her father and I will kill ourselves to keep them safe and to care for them through thick and thin. She also learned what it really means to be a mother. She learned that it's forever and she now understands the meaning of devotion.

When we marry we say, "for better or for worse." It's bad enough that we walk away from our mates, but it's worse that we kill our children.

[AnAmericanMother]

Amen! My hat's off to you. My kids have been remarkably healthy, although my son has had some learning disabilities and emotional problems we seem to have finally beaten our way through that and the teenage years by contrast seem remarkably serene (of course he just got his learner's permit so that may change. . . . < eeek >)

[cgk]

Pro-Life/Pro-Baby ping!

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[Kaylee Frye]

Good grief. I lasted through all the stories before this one, but this one had me in tears. Thanks for posting.

[Alamo-Girl]

Thanks for the ping!

[Coleus]

how are you? haven't seen you around lately.

[<1/1,000,000th%]

You are correct.

The hospital treated my dad so bad after his heart surgery that he beat up two male nurses to protect himself.

[cgk]

Much better, thank you!! :)

Got some things out of my system, so to speak, and am trying to get caught up around here. Thank YOU for all the pings & prayers!!! I'll be partpart time due to the upcoming move, but hope to at least get caught up on everything on the ProLife front. I appreciate SO MUCH all the pings... and all you do here for the unborn.

[cgk]

:)

[8mmMauser]

New Year ping (lest we forget) from Terri Dailies

8mm