September 25 2013

On July 19, 2000, I gave birth to a baby girl, weighing 8 lb. 3 oz., with jet black hair, puffy checks, and a little chin. She was everything I imagined her to be and a wonderful addition to our family. Andrew our son, who is about 15 months older, was excited to be a big brother, and I was once again longing to hold a new baby and do all the mommy things like breastfeed, cuddle, stroll and show off my baby. Immediately after birth, when the nurse laid Sarah on her back to clean her, she began to choke. It was the most frightening experience I had ever had. What was happening? What was wrong? We were extremely fortunate to have great care at the Royal Victoria Hospital in Barrie, Ontario and within hours, they had diagnosed Sarah with a cleft palate and Pierre Robin Sequence. Pierre Robin Sequence is a condition in which the lower jaw does not grow to the same size as the rest of the skull. They immediately made arrangements to transfer her to the Hospital for Sick Kids in Toronto.

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September 25 2013

The staff at Sick Kids knew immediately what to do. For five-and-a-half weeks they worked with Sarah, my husband Leonard, and me to help her feed and gain weight. The goal was to help Sarah feed so that we could avoid the G-tube. However, with her cleft palate and breathing issues, the two most difficult issues for babies with Pierre Robin Sequence, feeding became a nightmare. I had given up my desire to breastfeed Sarah. It was impossible. We tried bottle-feeding her for three days with the assistance of occupational therapists and nurses, but still it was laborious and difficult for both Sarah and me. It was challenging to measure her intake; she spit up a lot, and the feeding took so long that by the time we finished her three o’clock feeding, it was time for her to eat again. It was a vicious circle. Finally the decision was made to give Sarah a G-tube. I was scared of the unknown, and more scared of failing.

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September 25 2013

As I reflect now on why I was afraid of the G-tube, I can honestly say it was because I was unaware of the benefits it held, coupled with my fears of surgery and my incompetence with this new alternative. Would I ever learn how to do this effectively? Over the next several weeks, my husband and I became comfortable and competent at feeding Sarah with the G-tube. We were able to monitor her intake, enjoyed some playtime without bottles and fussiness, and most importantly, we could see the improvement in her growth and development.

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September 25 2013

At the end of the five-and-a-half weeks, it was time to take Sarah home. Suddenly a wave of fear flooded me. How were we going to manage? I was afraid of losing the security I had with being in the hospital, surrounded by great staff. Could I do this on my own? I was thrilled to be coming home and to bring my baby home with me. For the first time in a long time, we could all be together as a family. My son Andrew was so happy to have the baby home and we (my husband and I) were happy to be home together. Slowly, life began to take on a familiar pattern. We started to see how the g-tube could benefit us. Nighttime feedings were quick and easy. When Sarah needed to take medicine orally and she fussed, we cheated and gave it to her in the G-tube—no mess, no fuss—done. When Sarah was about a year old, we went to Florida and it was a great help to feed her in the plane with no fussing and no crying. Throughout this time, we continued to introduce different foods to Sarah, and before long, she was eating all the regular baby foods, along with the odd G-tube feeding to supplement her intake and nutrition. At 10 months, Sarah stopped eating altogether and I thank God for the G-tube, because I knew that she would still get the nutrition she needed to thrive and we did not need to struggle with her.

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September 25 2013

Now at four, Sarah no longer has her Gtube. She eats everything in sight! Despite a few challenges, the benefits of having a G-tube outweighed them. We were anxious when the tube was removed, but it was a simple procedure and now all that is left is a small scar on her belly. Sometimes, decisions need to be made that are “abnormal” to the way society expects them, but if we allow ourselves to seek out the benefits, who cares if the journey was different from the norm? The outcome is what matters most.

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