The Grandparents Travel to Varadero

Mati had been sick in bed for two months caused by a sciatic nerve pain; Yuclemen had had his intestinal flora ruined for years, prompting constant diarrheas, so it was sheer luck that both of them, my parents, happened to be in a rare period of good health when Valeria, Natacha, and I were getting ready to go to Cuba from New York. Mati and Yuclemen then, without any delay, made last minute reservations, got on a plane, and traveled from Peru to Cuba to meet Valeria, their granddaughter.

It took a lot of courage from both of them, whose health had been fragile, to make this trip, but they brought joy to us, and something unexpected, support to Valeria’s treatment.

My parents are about 70-years-old, and they had already gone through a big disappointment, wanting to travel when Valeria was born. They had been prepared for months to come to New York, but when the date approached, mom fell sick. Sadly, they had to cancel everything.

Months went by, and they didn’t know when they were going to meet their granddaughter; she wasn’t going to go Peru for the moment; her surgeries were the priority, but fortunately, close to the days we were traveling, sicknesses gave my parents a break, so they took the risk, and got on a plane.

After many hours of flying, a lay over in El Salvador, and a long drive from La Havana to Varadero, they finally met Valeria. Mom couldn’t let go of her granddaughter even though she had some muscle pain; and dad, whom I’ve always seen as a strict, tough person, was carrying and kissing Valeria. They didn’t get sick during the trip, on the contrary, they felt rejuvenated, doing a lot of activities by themselves, like touring in the hop-on hop-off buses, having exotic drinks at their hotel, and going to see the Tropicana show in La Havana days later.

They did what one has to do at an age when health becomes more unpredictable. They enjoyed the present; their health gave them an opportunity, and they took full advantage of it.

On our last day together in Varadero, they came up with a surprise; since they knew that the costs to treat Valeria’s mirror foot in Cuba were higher than expected, they offered their support. By telling us that they'd cover some part of the first surgery, they filled us up with joy and hope; they opened a slight opportunity to have a great surgeon in Cuba, and to have the help of Loly, the other grandmother.

Valeria's grandparents had traveled to Varadero, risking their health, to meet her, also to show that they were there for us. Valeria is fortunate to have such amazing grandparents, just as I'm fortunate to have such amazing parents.

Mati, Yuclemen, Valeria, and Natacha in Varadero

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Another Hospital in Cuba

“What’s her name?” asked the doctor.

“Valeria Ginocchio,” said Natacha.

“With that last name, they’ll know she’s not from here; what’s your last name?”

“Pérez,” responded Natacha.

“Ok, Valeria Pérez then; here’s the form, now go take the X-Rays,” said the Doctor, who wanted to make Valeria pass as a Cuban patient, and treat her for free at the Carlos M. de Céspedes Hospital, in Bayamo.

The Céspedes Hospital is on the east side of the island, and treats most of common diseases, but needs support for complicated cases. It’s located in Bayamo, Natacha and Loly’s hometown, famous for a historical event during the revolutionary war against Spain; in 1869, the residents of Bayamo preferred to set the town on fire rather than let it fall in the hands of the Spaniards.

Over a hundred years later, Bayamo stands out for it’s hospitality. Natacha and Valeria were there, visiting, when neighbors and relatives recommended going to the Céspedes Hospital; they knew the doctors, who could pretend Valeria was Cuban. Checking another hospital in Cuba was convenient because Loly could help with the post surgery treatment.

The doctors accepted the case, but in order to determine if they could treat Valeria's mirror foot, they needed the X-Rays to discuss at the once-a-week board meeting.

In the meantime, Natacha was getting ready to get back to the United States, so with the help of Loly, they organized a good-bye party for Valeria with the kids of the neighborhood.

They needed a cake, but there was a ban on eggs due to some Cholera cases that had affected the other side of the island; it was minimum, and dwindling, but the government took no chances, and forbade the use of eggs or any sub products.

Still, Natacha went to the town baker—who had her own chicken and healthy eggs—to order a cake; the baker refused, arguing that she could have a bad time if authorities found out. Fortunately, one of Loly’s neighbors was the santera of the area, so she personally went and told the baker to prepare the cake, who had no option but to accept.

“If the police see you with the cake, do not mention my name,” warned the baker to Natacha when she went to pick up the cake.

The party was a success with more than 20 kids eating the disease free cake, and running after the balloons, which were luxury; balloons are pricy, so parties rarely have them.

The day after, Natacha went to the Céspedes Hospital for the results of the board meeting; they concluded that they lacked the capabilities to operate.

The Céspedes Hospital’s doctors felt bad that they couldn’t help, and offered to remove the extra little finger, hanging from Valeria’s left hand. Natacha would have accepted, but she and Valeria were returning to the U.S. sooner than the period to remove the stitches. Valeria couldn’t get treated at this other hospital in Cuba, but we’ll keep this place in our heart. 

Valeria's good-bye party in Bayamo, Cuba

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A Hospital with Pulse

The air in the living room was heavy; the recent call with Dr. Salles about the surgery’s cost had blown up the balloons of hope to treat Valeria in Cuba. Natacha and I talked whether it still made sense to accept Dr. Salles’ invitation to visit the hospital where the surgery would take place, and since we were in the country already, we decided to go after all to The Frank País Orthopedic Hospital. 

The Frank País is on the east side of La Havana, and is made up of a series of three story high buildings; it’s over 40 years old, and while most of its patients are Cubans, it has a dedicated office for foreigners too, Health Tourism.

Because we were going to the Health Tourism office, we were spared of the burden to make an appointment like most people in the island do. Usually sick people, or relatives on their behalf, have to go before dawn to the hospital to wait in line, and get a ticket that would ensure an appointment on that day; then they have to wait for hours until doctors finally receive them.

We were fortunate to already have an appointment for 9 am. with Dr. Salles, who was busy when we arrived, so we had to wait outside his office. While waiting, an administrative worker, who was passing by, stopped to complement Valeria for a couple of minutes. A moment later, an old nurse, with a serious look, approached us slowly. She didn’t say a word; she just grabbed Valeria in her arms, hugged her, and smiled with her eyes closed; her looks went from toughness to sweetness. By that moment, I was starting to get an unexpected feeling of a hospital that cared; a feeling I was unfamiliar with. Those kind of kind encounters continued during the day; when we visited the financial assistant, she stepped out of her desk, carried Valeria, and sat with us on a couch; she continued talking to us while playing with her. 

When we finally made it into Dr. Salles room, he was cold and straightforward, and that was great; all I wanted from him was to be the scientist who concentrated on muscle, nerves, and metatarsus, but it was comforting to feel from the rest of the hospital staff the human touch; the Frank País had almost made us forget why we were there.

The warmness of the hospital became more important than the lack of covers on electricity sockets or that doctors didn’t hang medical school diplomas on their walls. The Frank País was an excellent option to operate Valeria if only the circumstances allowed it. Weeks after visiting the hospital, I frequently remember the big quote chiseled in marble in the lobby, “Making a handicapped child walk is the most noble humane deed that one can conceive of.”

At the Frank País Hospital in La Havana with Dr. Salles

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The Mother-in-law

Natacha and I felt relieved after finding a good medical option in Cuba, but the reason that was weighing more in favor of the island had nothing to do with science but with love, the love to Valeria from Loly, her grandmother.

Loly, a very strong woman and in her fifties, lives on the east side of the country, in Bayamo, and was doing everything within her limited means to help us finding a doctor; she even traveled to La Havana in the back of load trucks to talk to doctors. Bus tickets are very scarce for nationals, unless one is willing to pay the price for foreigners of $50, which is way higher than the $15 monthly average salary.

 

Loly had heard of Dr. Salles through Jose Antonio, her partner of more than three decades, whose grandson had had one of his fingers accidentally cut off by a folding chair. The finger was put in ice, and Dr. Salles was able to reinsert it.

In our case, since the post surgery therapy for Valeria might take up to 8 weeks, she offered to take care of her granddaughter for that time; after all, it might be harder for Natacha and I to stay that long in Cuba.

I appreciated her help in finding a doctor, but I also appreciated her help with Valeria while visiting Cuba; for the first time in the 6 months, Natacha and I had someone to take care of the baby. “Is she awake?” She’d tell us early in the morning, wanting to take Valeria with her. “Go out, have fun,” she’d say to us; those were long awaited words we had been dreaming of on many sleepless nights. Loly would also pass her calmness and enthusiasm on to us; when I asked Natacha how I’d take a shower with only a hot bucket of water, she told her, “Show him, otherwise he’s going to end up like a boiled chicken.” Or she’d say things to us, but facing Valeria like, “we’re going to visit your mom in the loony house on Sundays if she keeps getting that nervous.”

Loly would cook amazing stews, fried delicious stakes, and tostones, and she’d even prepared rice pudding, my favorite desert, but I was told that after I left, and Natacha, and Valeria stayed for two more weeks, she limited her menu to mostly rice and beans.

The only time that Loly was a bit down was when we got the estimate from Dr. Salles for the surgery; it was much higher than expected; for Cubans this sort of surgery is almost free, but we were foreigners. 

Valeria was ever hardly away from Loly in La Havana

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Trusting a doctor in shorts

If there were an upper middle class in Cuba, it’d live at El Vedado.

Unlike Old Havana, which is falling apart, El Vedado is well kept, and that’s where Natacha, Valeria, and I went to meet Dr. Salles for our first visit at his apartment.

The meeting was informal, and that explains why Dr. Salles received us at night, wearing shorts and sandals; he was strongly recommended to us, so his fashion preferences was something that we could overlook.

Dr. Salles, a man in his mid-forties, almost bold, but in good shape, wasn’t charging us for the visit; still I was aware of the Cuban tradition of giving doctors a little thank you gift. I had got him a 16 GB flash drive because that’s what people mainly use to trade movies, pictures, and music due to the lack of Internet. Those whom I had given flash drives, as gifts, were very grateful.

He first checked Valeria’s hands, and said,  “With the extra index fingers, I’ll create the thumbs”. For Natacha and I, it was great news; he was confirming what Dr. Miki, in Miami, had told us a few days before; although using another technique. “Just to be clear,” he added, “they won’t be perfect looking thumbs, but she’ll be able to grasp things. I’d wait until she’s two year old to operate those though,” he said.

Valeria was oblivious to all the plans we were foreseeing for her; she was having fun pulling Dr. Salles hair of his legs.

“Her right foot won’t be complicated, but the mirror foot is going to require more work,” he said. “Her feet could be done right after she turns one,” he added. “Why not all together,” Natacha asked. “Because I want to see how the hands develop; right now it’s too early to tell,” he responded. “Still, there will definitely be more than two surgeries, maybe four all together.”

He then got an iPhone, and took pictures of her feet and hands. If I had thought I was going to surprise him with the flash drive, he rather surprised me with his iPhone, which is a device I ignored they could have in Cuba. When I gave him my gift, he wasn’t impressed.

We agreed to call him the day after to get an estimate now that he had an idea of what needed to be done. We felt confidence that he could perform the surgery, but logistics had to be considered; going to Cuba four times in a short period of time might prove difficult.

Valeria and her grandmother Loly in La Havana

Stepping Up to Correct a Mirror Foot

La Havana, Thursday January 31st 2013

"What are the risks of the surgery? I asked Dr. Salles. "There could be a problem with a nerve or a vein." He responded. "But there's only a 2 or 3 percent chance that something will wrong."

With a 97% chance of success in correcting in Cuba the feet of Valeria, my 6 month-old daughter, I’ll go back to the U.S. pleased with this good option; still, the search for the right doctor for Valeria must continue.

Dr. Vitale, from the New York Presbyterian Hospital was the first doctor we visited right after Valeria was born, and he was honest. Dr. Miki, from the Miami Children Hospital was the second doctor, and he was encouraging, honest and provided an excellent alternative.

Valeria's case is extremely unusual. Her left foot is a mirror foot; that's is; if you put the inner part of your foot next to a mirror, the reflection would seem part of your food; for her, it is. Researching for similar cases, I’ve only found 28 such cases in the world, and only seven, which have been treated.

Her right foot has an extra toe with a little finger growing out of it; like a brunch from a tree. Both of her hands lack thumbs; instead she has an extra index finger in each hand.

The lacking of thumbs hasn’t stop Valeria from holding her baby bottle since she was 5 months old; insisting on getting my phone into her mouth, and pulling poor Greta’s hair, our little maltipoo, that only reacts by crying. For these reasons I know Valeria will be able to do anything in life that she proposes.

Valeria and Natacha in Miami

Her hair hasn’t grown yet, so Natacha and I are crossing our fingers; I want her to have hair, and Natacha wants hers. I’m a happy that until now she looks like me. “I had never seen a baby who looks a lot like her dad,” said an immigration officer at La Havana airport. “ Her name should be ValeGina”, said an aunt of Natacha, referring to my name Gino. She’s got her mother’s deep black eyes, which are very important because they’re crucial to define a person; she also has Natacha’s button nose.

It’s incredible the joy that Valeria has brought to us; it now depends on us to make her as possible as we can; that’s why we’re in Natacha’s country, Cuba, well recognized for its health system, meeting doctors until we can determine who is the perfect doctor for Valeria.

Valeria and I at the Hotel Nacional in La Havana, Cuba