In the Eye of the Beholder
Posted by realityrounds on May 11, 2009
“The most beautiful things in the world cannot be seen or even touched, they must be felt with the heart”
Helen Keller
*Sarah had all the hopes and dreams for her unborn child as any mother has. She was anxious about the pregnancy, and how her labor and delivery would be. Would she be in much pain? Would she need an epidural or a C-Section? Sarah took care of herself in her pregnancy. She went to all her prenatal appointments. She took her vitamins and ate right. She did not drink, smoke or use drugs. Her nursery was all ready and waiting. Drawers were overflowing with pink, fluffy baby clothes, fitting for any princess. She had a beautiful name, Amelia, picked out for her baby daughter yet to be born. Sarah fantasized about who her daughter would look like. Would she have her blue eyes, and her husbands dark hair? She was anxious to finally meet her precious little girl.
The slow waves of contractions came, and Sarah’s body was telling her it was time to greet her newborn. There was sweat, and exertion, and pain, and great joy in the delivery room. All her hopes and dreams of motherhood came closer with each contraction and descent of her baby. The labor room became alive with activity and excitement. Amelia was born.
Sarah: “Is my baby OK? Why isn’t she crying?”
“Your baby needs to be brought to the NICU, now”
Sarah: “What’s wrong?” “Please can I see my baby?” “Please!”
Amelia is rushed to the NICU by staff with ashen faces and down cast eyes. Even the most seasoned NICU staff had never seen a baby like Amelia. They were in shock.
Amelia had no face. Her body and extremities appeared normal. She had dark hair. Her face was smooth. She had no eyes, no nose, no mouth. There was a small circular opening where her mouth should have been. Amelia’s small, newborn body was surrounded by the best and the brightest. Neonatologists, surgeons, neurologists, geneticists all at her side.
“God, she looks like a monster.” “The poor mother.” “Who could possibly take care of a baby like this?” Medical professionals can be so cruel.
Amelia had a rare genetic condition known as Holoprosencephaly. With this condition babies are born with a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. But, occasionally, as in the case of Amelia, they may survive.
Amelia became a “chronic” patient in our NICU. She was poked, prodded, and studied. The NICU became her home for the first two months of her life. Sarah would visit Amelia every day. The staff was skeptical. Why would a mother set her self up for so much pain?
Sarah would come every day. She would dress Amelia up in the pink, fluffy outfits that were overflowing in her drawers. Amelia who was described as a “monster” or “cycloptic” was only seen as a princess in her mother’s eyes. Amelia did not react much to her medical caregivers. They went about their routines. Every three hour vital signs, G-Tube feedings, anti-seizure medications, physical assessments, etc.
Amelia’s life was not routine to Sarah. She came and cared for her daughter, alone, every day. Her dark-haired husband had broken under the pressure of caring for his dark-haired ,imperfect child. Sarah was alone. She came everyday. She bathed, and sang, and talked to Amelia. She dressed Amelia in the clothes she bought for her in her pregnancy dreams. After eight long weeks institutionalized in the NICU, Amelia smiled. It was an unmistakable smile meant for her mother alone, and it was beautiful.
*Amelia was eventual discharged to a pediatric hospice facility.*
RR
*Fictitious/composite story*
Kathy said
Wow, what a bittersweet story. It is horrible the cruel things people can say. On my blog a few weeks ago, I included the link to The Story of Faith Hope, a baby who was born with anencephaly (and is still doing well, at 11 weeks), and you would not believe the horrible things that people have said to her — she had to close her comments because of all the hateful comments people were leaving; people would track her down on facebook and send her hateful messages through there, so she had to discontinue that, as well; she’s had to change email because people would find her email address and go out of their way to tell her hateful and vile things about herself and her baby. As if her life weren’t already hard enough, taking care of a baby with some pretty severe medical issues, and knowing that her baby is terminal (even if she doesn’t look like it, with her cute chubby cheeks and body — at least partially due to steroids to help her breathe).
realityrounds said
People sometimes say cruel things out of shock, or ignorance, or because they do not know what else to say. The staff eventually became quite attached to this baby. For some reason, people loooooooooove to judge mothers over everyone else. If the mom of the anencephalic can bring some measure of joy, and not cause great pain, to her child, than her critics need to butt out. I can not imagine caring for a terminally ill child. I do not know how these mom’s find the strength.
atyourcervix said
I once took care of a mother who was expecting a baby with holoprosencephaly. She was advised to abort, multiple times. She chose not to abort – and thank goodness!! When the baby was born, she looked……absolutely NORMAL!!! It turned out that the baby had the very mild form, where there was just some minor structural anomalies of the brain.
realityrounds said
Ugh! There certainly are varying degrees of holoprosencephaly, if you google it you can find some rather shocking images, and images that appear like normal looking babies. Genetics is a tough one. Generally if a baby has three minor anomalies (like an ear tag, extra digit, or two vessel cord), there will be one major anomaly. They can sometimes be hard to detect.
Akiko said
Years ago I worked in a big city medical center. There was a baby born with Klippel-Feil syndrome who never left the nursery. She lived to be almost 2 years old. Everyone at the hospital knew her, we all visited her. She could not move very much but was just lovely with big brown eyes and a sweet face. Her family was devoted to her as was her caregivers. When she died most of my co-workers cried. She was very much missed. For almost 2 years she was our little sunshine child, beating the odds. Her name was Jasmine.
RN-ish said
This is a sad, but not a rare story. I hope Amelia did not suffer much in her short life. Your post reminds me that many marriages and relationships break under the pressure of caring for a handicapped child. I wish there were more support systems in place.
Rachael C. said
If you haven’t heard, there’s a wonderful online support outreach for moms-to-be with a poor or otherwisd adverse prenatal diagnosis: Be Not Afraid
realityrounds said
I have not heard of that support group. I will definitely look into it.
Kelli said
This is such a heartwarming story. I am honored to know you thought of my little blog while writing this piece.
Thank you for all you share.
Kelli
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