Wednesday, June 3, 2015

Difficult choices

The Thomases spent a month at Gillette. Alex held her son, though it took three people to maneuver the equipment to make it happen. She and family members shot hundreds of photos of SJ, often smiling despite the tubes keeping him alive. They were able to dress him, bathe him and take him for short walks outside.

"The first two months were amazing," Shawn said. "The last month in the hospital was hard, but we shared wonderful moments together."

Then they had a terrible choice to make.

They hoped SJ could breathe outside of the hospital with the help of something like a sleep apnea mask, but it didn't work.

The Thomases had to decide whether to take him off his feeding and breathing tubes and let SMA run its course, or have doctors perform surgery so SJ could breathe through a tracheostomy tube and eat with feeding tubes for the rest of his life.

With the second option, SJ would never be able to move or talk, he would need around-the-clock medical help at home, and the common cold could kill him.

Through social media, Alex had connected with other parents of children with SMA and read about mothers who chose the second option and wondered every day if it would be the last day with their children.

Finally, the Thomases asked themselves if they were in their son's position what would they want done. They decided to take him home.

"We wanted him without tubes or anything like that," Alex said. "We just wanted to hold him."

They took an ambulance home, accompanied by hospice nurses and the ambulance crew. After removing the breathing tube, Alex and Shawn had 30 minutes to hold their son.

"He slept through the whole thing," said Alex, whose left wrist is tattooed with her son's initials, surrounded by angel wings and a halo.



  1. An ultrasound that day showed our daughter had very little brain matter, and the amniotic fluid was even lower than before, confirming our suspicions that her kidneys weren’t functional. Without functioning kidneys to help make amniotic fluid, her lungs also hadn’t developed. [trisomy 18]

    Making the decision to terminate was the hardest thing we ever had to do, and getting up the courage to go to Atlanta was equally difficult. We knew we couldn’t do it again emotionally. We decided to come home and let nature take its course. Each day that I carried her, I wondered if she had died, and I was walking around with a dead baby inside me. Each morning when I woke, I wondered if this would be the day she died. If I hadn’t felt her move for awhile, I frantically called the doctor to see if I could come in to find a heartbeat. Each day was a waiting game, a game filled with tortuous what-ifs and pain. What kind of life could she have if she survived birth? How was this going to affect my marriage? How would our 5-year-old react to losing the sister she always wanted, especially if we were able to bring her home for a few days? I was a basket case. I didn’t eat or sleep. I lost 12 pounds in less than two weeks. Somehow, I got out of bed each morning and tried to make a life for my daughter, even though I felt like I was traveling through mud.

    Jenna was stillborn, and I knew she would never suffer. I made a vow to speak out and share our story, to fight laws that will limit a woman’s ability to make healthcare choices for herself and her child. I have debated this topic on the Internet. I spoke in front of our state legislature and made a commercial, sharing our story to fight a prohibitive state law. No shame should be attached to one of the most loving, selfless acts a parent can make with regard to a sick child. If a born child is declared brain dead, parents are allowed to turn off the machines and allow their children to die peacefully. If a child has a terminal illness and all hope is gone, parents can decide to stop treatment. Why couldn’t we make the same decisions for our daughter? Is it simply because she wasn’t born yet?

    As hard as I fight for a woman’s right to choose, I would also fight for the opposite –a woman’s right to carry to term. I don’t believe a one-size-fits-all solution exists when a family is facing a poor or fatal prenatal diagnosis. We all love our children and want what is best for them, and we should be free to make those decisions
    - See more at:

  2. Like many people with advanced-stage cancer, I wonder when I will decide about treatment, “Enough is enough.” In helping me formulate an answer to this question, Atul Gawande’s latest book, “Being Mortal,” will now play an indispensable part...

    With respect to the people whose stories he recounts, Dr. Gawande wants us to consider when it is best to stop treatment — not for the pocketbook, but for the patient’s well-being. His opening account about a man with widely metastatic prostate cancer serves as an admonition. The patient he calls Joseph Lazaroff opted for dangerous surgery, and he ended his life in intensive care.

    Here, as throughout, Dr. Gawande emphasizes his own learning curve. Although at the time he believed that “Mr. Lazaroff had chosen badly,” now he feels that he and his fellow physicians failed to talk honestly about “the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life.”

    Another case history, about a new mother with inoperable lung cancer, bears out the view that too many oncologists overestimate their patients’ survival time, remain reluctant to specify a prognosis, and offer treatments unlikely to work. Sara Thomas Monopoli underwent a series of protocols that failed to produce anything except debilitating side effects which, in turn, led to her death in the hospital.

    The narrative about the decline of Dr. Gawande’s father, a physician, from a slow-growing spinal cancer proves that even doctors need guidance in making complicated decisions when the medical “pressure remains all in one direction, toward doing more.” After surgery, when an oncologist concluded a list of chemotherapy options by promising the senior Dr. Gawande that he could return to the tennis court, his son erupted in rage at such a “daffy” idea. With the help of hospice, the family eventually witnessed the benefits “of living for the best possible day today instead of sacrificing time now for time later.”...

    Dr. Gawande sets out to teach doctors not to try to fix what may be unfixable but to engage in helping patients conclude their life stories in a manner congruent with their values and with a full understanding of the risks and costs of the trade-offs they are willing to make...

    Though few of us can control our ultimate fate, one of the rare benefits bequeathed by cancer is the opportunity it gives us — albeit in grim circumstances — to author our sense of an appropriate ending, whether or not it occurs the way we imagine it.