| One Gutsy Little Gal
Sophia Leal
Who can resist the sweet smile of a small child or the feel of a little one's arms around your neck or a warm cheek fresh from a nap pressed against yours? No matter how many times a child is born all over the world, each day, each hour, there is nothing like the emotion you experience as you hold your infant in your arms for the first time. For Robin and Jim Leal, that wonderful feeling was doubled because they had two bundles of joy to hold this past December when their identical twin girls, Sophia and Olivia were born. Their hearts melted as they looked into the lovely faces of their little girls. It was love at first sight.
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The twins' birth was especially sweet, since Robin had experienced some serious health problems in the preceding months. In November she developed Bell's Palsy, a facial nerve disorder, which left her partially paralyzed on the right side of her face. She also has a high blood pressure condition and so she was monitored very carefully during her pregnancy. At 36 weeks along, her doctor ordered strict bed rest for her. Sophia and her identical twin sister, Olivia, were born on December 18, 2004 via an emergency C-section at Scottsdale Shea. Twelve hours after the births, Robin developed Hellp syndrome, a serious condition that can affect the liver and blood pressure. She had to be taken by helicopter to Good Samaritan hospital for emergency treatment. Both little girls seemed perfectly healthy when they were born, but on March 18, Olivia was diagnosed with a rare liver disease called Biliary Atresia, after a routine vaccination disclosed the symptoms, and she was admitted to Scottsdale Shea.
The happy life the new family was just settling into had now changed drastically. The devastating news threw them into a turmoil of fear and worry. The life they knew had suddenly become a different landscape and the next months ahead would become a roller-coaster ride of emotions.
Biliary Atresia is a serious disease of young infants whose cause is unknown. It results in inflammation and obstruction of the ducts, which carry bile from the liver into the intestine. Since bile cannot flow normally, it backs up in the liver (a situation called biliary "stasis"). This results in jaundice, or a yellowing of the skin, and causes cirrhosis, in which healthy liver cells are destroyed and replaced with scar tissue. This scarring interferes with blood flow through the liver, causing more cell damage and scarring. The odds are only 1 in 20,000 newborns will ever get this disease, and those that do usually don't live past their first year of life.
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There is no cure for Biliary Atresia. The only feasible treatment for Biliary Atresia to date is a type of surgery that creates drainage of bile from the liver when the ducts have become completely obstructed. This operation is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it. In the Kasai procedure, the surgeon removes the damaged ducts outside of the liver and replaces them with a length of the baby's own intestine, which acts as a new duct. The aim of the Kasai procedure is to allow excretion of bile from the liver into the intestine via the new duct. The operation accomplishes this about 50% of the time.
After her brief stay at Scottsdale Shea, Sophia was transferred to Phoenix Children's Hospital, where she spent the next two and a half weeks and where her tiny body was subjected to three surgeries. The first operation - the Kasai procedure - didn't seem to be working, so Sophia had to undergo exploratory surgery so the doctors could see what had gone wrong. There was a blockage in her system and so, four days later, Sophia had to be operated on once more to redo the Kasai procedure. After the failure of the Kasai procedure to improve Sophia's condition, the only other course of action to take was a liver transplant. |
The Leal's next turned to the University of California San Francisco (UCSF) Children's Hospital for help. The hospital has a well-renowned reputation for innovative medicine and advanced technology, and is the best children's treatment center in California. The hospital is also proactive in living-donor related transplants. UCSF flew a Lear jet out to Phoenix, with a doctor and nurse aboard, to pick up Robin and Sophia and take them to their facilities in San Francisco. Southwest Airlines flew out Jim, his mother and little Olivia.
Sophia developed ascites, which is fluid in the abdomen. Her belly was huge - extended out to about thirty centimeters. The medical team worked to keep her stabilized while she waited for a liver donor. The Fellowship Church put out the word about the need for donors, and many people volunteered to get tested to see if they had a match. Robin was tested as well and found she was a viable candidate. The medical profession is generally reluctant to take the organs from a healthy donor, particularly from a mother, because of the high risk involved. But, Sophia's condition was deteriorating rapidly and Robin was right there and a viable candidate. The doctors at UCSF agreed to transplant a portion of Robin's liver into Sophia.
It was Mother's Day weekend, when the transplant was scheduled. On Friday, May 6, 2005, Robin and Sophia lay on operating tables placed side-by-side - one adult woman and a tiny baby, whose delicate body seemed too small to hold anything else inside. It must have been a heart-wrenching sight to see the two of them there, mother and child, lying next to each other under the glaring lights of a chilly, sterile operating room. A portion of Robin's liver was transplanted into Sophia's tiny body - Sophia's fourth operation. The doctors operated on Robin for 5-1/2 hours and on Sophia for 8 hours.
Robin's liver is expected to regenerate in a period of six to eight weeks. After speaking with Robin, you know where baby Sophia gets her tough strength. Robin was eager to get moving as soon as possible after her operation. "I made myself walk," she says. "I had a strong incentive - to see Sophia." It also helps that Robin has a great sense of humor. She was raised in Kentucky and as would be expected, is crazy about the Kentucky Derby, which was running that Sunday, Mother's Day. She had the nurses laughing when she told them, "I've got to watch the Derby!" Ironically, before this crisis, Robin had never been in a hospital before - if you don't count her own birth. "I'd rather be in wine country," she says. "I've been so good throughout all of this and haven't had anything to drink. Oh, for a dirty martini!"
In the months following the transplant, Sophia's body has tried to reject her new liver several times and she has suffered severe internal hemorrhaging - resulting in her undergoing yet more surgeries. One week after the transplant surgery, the doctors went back in to check Sophia's new liver. A sliver was sent off to the lab and she was found to be in severe rejection. Sophia had to have a chemical infusion injected into her via an IV. A nurse was on stand-by for three days. On the fourth day, she was given more drugs. Her blood was checked every four hours. A needle biopsy of the liver was taken once more and again it was found that her body was rejecting the liver.
Sophia had to be given three blood transfusions and it was feared she was hemorrhaging internally. So, a week and one-half after the liver biopsy surgery, she was opened up once again. A pint of blood was drained from her abdominal cavity and the area cauterized. The hospital hosted a picnic for their children patients and their families and it was good to have some fun with their new family. But soon afterwards, Sophia developed a fever from a bacterial infection and a needle biopsy was done again - this time the rejection factor was upgraded to "moderate."
Doctors have inserted a Broviac Catheter into Sophia's chest. The Broviac Catheter is a t ype of intravenous tube used to give fluids and medications to infants or children. Sophia's tiny body is assaulted daily by all the drugs she must take. Ironically, the steroids she takes make her appear bigger and older than her twin. The catheter has to be flushed every day and they have home health care to help with that.
But, for Robin and Jim, it's been a grueling routine of constantly going back and forth to the hospital every week. The physical fatigue they experience and the mental exhaustion that comes from the uncertainty of each day are exhausting. And they have another little baby that needs their love and attention too. But, they have learned to live each day, moment by moment, and count each blessing that comes their way. Robin says, "We've learned to enjoy every breath." According to Scott Foreman, their pastor, there is one current that runs through them - a strong faith that has helped them in their loneliness and despair. Even though they are far away from home and distance separates them from their community, they have been encouraged by the prayers and kind deeds of their neighbors, the Fellowship Church members and the We Care organization. The staff at UCSF has also been very caring. There are young female interns they call "huggers" at UCSF who take the babies for cuddling so Mom can get a break.
James and Robin are hopeful that the many drugs Sophia takes can be tapered off, and the catheter removed by October. Unfortunately, there is one other hurdle Sophia needs to conquer and that is her white blood cell count, which has to be monitored carefully. If her white blood cell count ever goes down, she may need a bone marrow transplant. So far, drugs are controlling that. The doctors and nurses at UCSF have been amazed at how strong and attentive the little girl has been, after all that has happened to her. Her doctor told Robin, "This daughter of yours is incredible; she will do wonderful things in life."
What has made their situation even more difficult for Robin and Jim was the fact that they had to be uprooted from their new community to live in San Francisco. In addition to worrying about leaving their house in Anthem, Robin was concerned about her aged grandmother, whom she had moved from Kentucky to a Scottsdale nursing home so she could be near them. Jim also had to quit his job at Walgreen's in Phoenix and only recently was given another position at a Walgreen's in San Francisco. The hospital helped them find temporary housing at the Koret Family House, where everyone has been so kind to them. But, it is the love and support of the people they left back in Anthem that has been a real source of strength for them.
During this whole ordeal, Jim and Robin have received tremendous assistance from the Fellowship Church, their new Anthem friends and neighbors, and We Care In Anthem. Scott Foreman, pastor at the Fellowship Church in Anthem, has traveled to San Francisco several times and was with the couple when Robin and Sophia were operated on. Fellowship Church members, as well as people from several other local churches and civic organizations have pitched in. Meals were prepared and delivered by a dedicated group of women belonging to We Care at the Fellowship Church. Members of the Vineyard Church, strangers to them, came over their house the day before Sophia's surgery at the Phoenix Children's Hospital to conduct a prayer vigil. Anthem resident, Susanne Kirk, gave them a meal and some money to tide them over. Their neighbors, Jamie and Jonathan Pear, are paying for the maintenance of the Leal's in-ground pool. Barb Walker, a surrogate Grandma to the girls, drove their family van out to San Francisco for them. Barb's daughter, Wind Firedancing, helped Robin as a "doula," or new mother assistant. Before they had to move to San Francisco, several women came to stay with Jim and help with the care of Olivia while Robin and Sophia were in the hospital - among them, Jennifer Eidsvic, Karen and Cassie O'Leary. Jim's great-aunt, who herself has cancer, Margot Higuchi, came and cleaned the house while Robin was bedridden. Jim's young cousin, his mom and Robin's friend have all flown in to help out.
Cindy Kurtze, in particular, has been invaluable to the Leal's; she has all their household expenses organized on a spreadsheet so that their bills are being paid on time. Robin and Jim call her their "Head of House." Cindy also acted as surrogate "cat mother" to their two cats, Sid and Sylvy, until their neighbors Karen and Cassie O'Leary took that duty over. We Care , of course, has given them tremendous financial and personal support and have arranged for meal deliveries to Jim when Robin was away from home.
"It's just amazing," says Robin, "how wonderful everyone has been. When I think of how people have helped us out - even people we have never met - it brings me to tears."
At the tender age of seven months, Sophia Leal is one gutsy little girl. Throughout this whole ordeal, she has remained "incredibly strong," according to her parents. Happily, the two little sisters are growing very nicely. At press time, Sophia weighed in at 15 pounds, 8 ounces and Olivia at 20 pounds. Their Mom reports that, "Elmo is Sophia's newest little boyfriend." Sophia also loves Celine Dion's lullaby CD. It is hoped that Sophia will be able to taper off most of her medication and have her catheter removed by October and they would be able to return to Anthem then. It will be one happy day when Robin and Jim can take their little girls home again. |
