Juniper's Story

To Whom It May Concern:

I am adding my voice to the thousands of others who have urged you to consider saving the Prouty Garden. Here’s my story.

Let me first state that I have nothing but the utmost respect and gratitude for Boston Children’s Hospital. Your fine neonatal surgeons, in particular Dr. Thomas Hamilton, and skilled nursing units, in particular the nurses on 10 East, 10 South, and in the NICU, without a doubt saved my daughter Juniper’s life last year. Not to mention the excellent outpatient team associated with the Center for Advanced Intestinal Rehabilitation (CAIR).

Juniper was born with gastroschisis at Beth Israel Deaconess Medical Center. Her bowels were protruding from her abdomen through a small perforation near her belly button. Immediately following her birth, she was taken via ambulance into the OR at Children’s where Dr. Hamilton skillfully replaced her bowels into her abdomen and made her whole once again.

After a brief stay in your NICU, she was transferred to 10 East where we spent the first seven weeks of her life huddled together as a new family of three, trying to make sense of life with a newborn in a hospital setting. Our baby’s bowels were broken. She would need to go back into the operating room to repair two blockages, once her bowels had healed from the trauma of exposure to amniotic fluid and air. In the meantime, she was being fed through an IV in her chest, fully dependent on Total Parenteral Nutrition (TPN).

These weeks leading up to her surgery were full of anxiety and despair for me as new mother. I didn’t know if my baby would live and not just live, but thrive. I wanted nothing more than to free her from the tubes and lines she was attached to and hold her in safety forever. But we needed those tubes and lines. We needed to be there at the hospital. And so, we tried to make a life for ourselves there. We got to know our nurses. We had a routine. My husband would go to work in the morning, and Juniper and I would take long walks around and around the 10th floor, me wheeling her IV pole alongside us.

In the evenings, my husband would come “home” from work and we would go to the garden. Always, every night, to the garden. Yes she was still attached to things, but the fresh air, the quiet splash of the fountain, the presence of others socializing, eating, playing games. It felt like life. Real life. Not fluorescent, sanitized hospital life.

In the garden, we took our first outing as a family. Juniper’s first newborn photos we snapped with our phones on the grass, us lying happily next to her. In the garden, she felt her first sunshine, her first breeze, her first grass. And we felt normal, like a family. Not a family in crisis.

Eventually, Juniper had her second surgery to repair her blockages and then we spent another six weeks rehabilitating them to the point where the doctors felt comfortable releasing us to go home. All told, we spend 101 days living at your hospital during the summer of 2013 and I can’t think of a day that we didn’t spend in the garden, unless it was raining. On the weekends, we’d take food, sketchbooks, novels, and Juniper of course, and we’d set up a picnic. We met other parents there and got a feel for the community that was happening in this big hospital around us. We had garden regulars that we saw grow and heal, other families who depended on the garden to entertain the young siblings of children receiving treatment. We witnessed some patients for whom it was an entire production of nurses and family members just to get them to the garden, and they couldn’t stop smiling once they were there.

Since I learned that the garden might be demolished, I have been asking myself: “What will families like us do, without the Prouty Garden?” I’m talking about the people who make your hospital home for months, sometimes years. Where will they go to feel normal? Will they eat their dinner in the same hospital room they’ve been pent up in all day? Will their baby feel air for the first time in some small shaded courtyard with artificial bird sounds? Where will they go for a game of soccer or baseball? Will they be able to meet other families in the bustle of the basement cafeteria? How will they survive?

Because I’m not sure that we could have. And I don’t think they should have to just “survive.”

I respect that the hospital needs to evolve to continue to provide its state-of-the-art medical care to children of the future. But at what cost? There is only so much space on that property in Longwood. There has to be a better solution.

Trustees, I urge you to keep searching for it.

Sincerely,
Shelley Senai