Forgive My Silence

If you hear audible sounds of relief and a woman’s tears rolling down her face, it’s because I’ve just received the best news a person could imagine. No, I didn’t win the lottery — unless it’s the lottery of life. Serena Fawcett will have been released from Georgetown University Hospital by the time you read this.

On August 10th, 2006, my two-month-old granddaughter Serena was diagnosed with Biliary Atresia, an extremely rare liver disease that randomly impacts one out of 16,000 newborns. Biliary Atresia is a condition which precludes a child’s bile ducts from functioning, essential to  survival.

Our families’ lives came to a halt. What to do and where to do it? Biliary Atresia is the #1 reason for liver transplants among infants. There’s no guarantee of finding a suitable donor. There always are concerns over organ rejection. And the list goes on.

Between my husband’s death on September 12th, 2006 and Serena (and Miles, Mira and 3+ year-old Saira), the thought of writing for Bonjour Paris, about Paris, France, or about any subject, became unfathomable. Paralysis set in as each and every day brought new challenges. Dealing with Serena’s physical needs, Miles’ and Mira’s emotional and logistical needs and Saira’s sensing something was ever so wrong with her baby sister, required an army of people on the sidelines willing to help. Some days, it felt as if there weren’t enough hands available to accomplish the necessary juggling. 

Mira is blessed by having a truly supportive family, who did whatever was needed, at each and every hour of the day.  Even though I always swore that being a grandmother “wasn’t my thing” and “Come see me in Paris and/or Provence,” there was no way I could or would bail. I was destined not to eat at Alain Ducasse or any of my favorite French bistros. I was going to have to forego my daily pilgrimages through the Luxembourg Gardens while indulging in a croissant from Kaiser, the corner bakery.  My soul ached for the City of Light. But, my body and heart remained here as there was no way I could leave Washington, D.C. during this critical time.

In the garden in Provence, the vegetables came and went in the sadly neglected potager in the house in Provence. As the summer progressed, my mind occasionally skipped to the figs that would have been made into the world’s most sumptuous fig preserves. Neighbors picked the pears, apples and so many other edible goodies that exuded from the trees and made tarts, chutneys and other creations. I hope they left a souvenir or two for me.

But, these were ephemeral thoughts. Would Serena find a donor match?  She was placed on a waiting list. Would the right match come in time or ……?  Infants in Serena’s condition have approximately less that a year to live when they’re in Serena’s condition.

An alternative is the living donor route. After more tests than anyone could fathom, my son was accepted to be Serena’s. He was subjected to so many examinations, plus psychological evaluations, that anyone who donates a lobe of his or her liver is truly “becoming one” with the recipient.

Being a parent with the same blood type does not a donor make as there are so many variables. The transplant team at Georgetown University Hospital (we profusely thank you — you were extraordinary) admit that contrasted with “deceased” donors, they know the origins of the organ plus have the luxury of time should either the donor or the recipient not be in optimal health. The first pre-Christmas transplant date was aborted since Serena spiked a fever a few days before the surgery was scheduled. 

The holidays weren’t joyous. Had it not been for Saira, any symbols of making merry would have been forgotten. Serena was in and out (but mostly in) the hospital since each time she spiked a fever or anything else that looked slightly suspicious, she’d immediately be readmitted to the Pediatric Unit. Mira or a family member remained with Serena the entire time. Hospital food is anything but gourmet and family (especially Mira and her mother) dropped enough weight that when this is over, they’ll be entitled to new wardrobes.

But, there are very real ethical issues when taking a perfectly healthy individual and potentially jeopardizing his or her well-being. Even though they’re relatively few, complications do happen.

Transplant day was rescheduled for January 2nd.  Happy new years to one and all. I sat with Miles as he was prepped to go into the operating arena. Even though he’s frequently more mature than I, it felt as if I were watching my tiny baby being wheeled in for surgery. His feet were hanging over the gurney since he’s 6”4”. It was a day from hell as we sat huddled waiting for the surgeons to tell us whether or not Miles’ lobe was a fit for Serena and when the doctors announced she was going from the recovery room to ICU, we gave thanks to any and all gods.

When Miles called to announce Serena’s homecoming, I collapsed into a pile of tears. Even though I know there will be many ups and downs, Serena’s being given a new start on life, albeit more fragile than other children’s. One of the consequences of her condition is a lack of an immunosuppressant system, meaning she’ll be vulnerable to any and all germs.

I can’t wait to return to Paris. It’s my home and the place where I’m the most comfortable. But I know I’ll be spending considerably more time in the Nation’s Capital since Serena won’t have the green light to travel until she’s older.

During these few months, I’ve been lucky enough to spend time with bereavement therapists. My mother continues to float in a sea of illness and no longer really knows me, Serena, Miles, Mira, Saira and our extended family.

I’ve learned a lot about myself and how to maximize self preservation. This is something I’d never choose – -but it’s indicative of just how resilient a family can be when put to the test. Let’s hope no family has to be.

I just returned from spending some time with Serena while she rediscovered her crib at home. All I can say is how lucky we are.  Her smile was enough to make me want to start crying all over again.

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