Valeria's Progress

If part of my feet’s bones were cut off, I'd be crying to my mom that I'd never walk again, but Valeria, like most babies, is resilient, and completely unaware that she went through surgeries.

Her progress was moving quicker than I anticipated.

Since she accidentally removed the casts off her feet, only a week after the surgery, she's tried to stand up. Silly me, I didn't ask that Friday when we went to see the doctor whether we could allow Valeria to stand up if she tried, and I paid for that.

In my mind she was in pain, so she would never try it; in her mind she was finally free of those casts, so she would only crawl, jump, and walk. I emailed the doctor asking my concern, but it was the weekend, so he didn't reply until Monday.

Loly, my mother-in-law, Natacha and I ended up exhausted trying to hold her and distract her from wanting to lean on her feet. We listened constantly the Gummy Bear song and Mickey's Hot Dog song, let her play with all the cel phones and remote controls of the house, and took turns, carrying her back and forth in our small NY size apartment. Finally on Monday, Dr. Alburger responded, "it's ok for her to stand up; it's a good sign."

Since then, the floor has been her kingdom.

Three weeks later, we went back to Philly to Shriners Hospital for Children to remove the bandages and get the final discharge. Dr. Alburger showed up to his office with his assistant, and holding a brand new package with scissors and bandages in his hand. He sat in front of Valeria, who started crying, and began unrolling the bandages until the feet appeared in front of us.

They had the right amount of fingers, and almost had the right shape. They were still swollen, and, because of the bandages, the top parts were almost live skin. Dr. Alburger used the scissor to remove the stitches from each edge, but the rest of the stitches were inside Valeria’s skin; her body was going to absorb them. The shapes of the feet were 90% as expected, but the x-rays were 100% perfect.

Seeing the before-surgery and after-surgery x-rays was extremely comforting, and gave me a moment of peace. I told Natacha, “after all this, we need a good vacation.”

I now see Valeria’s feet, and I’m amazed by their new look; it’s gladly unexpected after being used to seeing the old foot, the mirror foot.

We prepared for months for this moment, and were joyful that we took the right action. We had been very patient though; especially when we wanted to do something since that moment in the ultrasound room, over a year ago, when Valeria was growing in Natacha’s womb, and the ultrasound technician was telling us that everything was normal with the baby. Suddenly she stopped smiling, printed some images, and left the room. She came back with a doctor, a matured woman, who sat in front of us, and told us, “your baby has an extra digit.”

Valeria's brand new feet work perfectly fine

Help from Cuba

In early 2012, I called the United States Interest Section in Havana—AKA the consulate, but because of the embargo, it has a different name—to make an appointment for Loly, Natacha's mother who lives in Cuba, for a visa to the US. The soonest one available was for November 2016.

Loly wanted to be in New York when Valeria was born, but she had to miss it, and she wanted to help during Valeria's surgery, which Natacha and I really needed, but having the surgeries in Cuba proofed rather complicated.

In the meantime, we continued looking for the right doctor in the US, and found Shriners Hospital for Children in Philadelphia; they were amazing, and quick to set up a date for the surgery.

We mentioned to Loly that we were happy with the physicians we had found, and that the surgery was within a few weeks, that would be in May 2013. She mentioned that she had heard visas’ appointments had been sped up; we should try calling again the US Interest Section. And I did without any hope.

When I phoned, they asked me for Loly’s info, and then they said, “we have an opening for April 16th, 2013.”

I thought, “2013? That’s in how many years? Wait! That’s in two weeks!”

“Will you take it or not?” the operator at the Interest Section asked.

I was still in shock, so it took me a few seconds to react, but I said, “Yes, we take it”.

In less than fourteen days, Natacha and I had to gather the documents to proof that we could financially invite her, and Loly had to gather all the documents to proof that she had strong ties to go back Cuba. The main tie was that she’s the only taking care of Nancy, her 87 years-old mom.

On April 16th, only 35 people out of 700 got visas to the US; one of them was Loly.

She didn’t have a phone, but a relative of hers emailed me with the results after the appointment. I called Natacha, who was anxiously waiting for the news, on video chat. She started jumping with joy when she heard the news, and hung me up right away; “Bye”, she said, “I have to tell the family.”

After getting her visa, Loly went back to Bayamo, packed her things up, arranged who was going to take care of Nancy for the three months she was going to be away, and flew to Miami. All within three days.

She spent a short time there visiting her relatives, and finally made it to New York last night; Valeria was resistant to be carried by Loly for a while, but after a few grandmother tricks, Valeria ceded.

Natacha and I finally got the help from Cuba that we needed, and right on time. We’re ready to drive in a few hours to Philadelphia for the surgery of the mirror foot.

We're Having Surgery in May

The lobby at Shriners Hospital was quiet, and it was just Natacha, Valeria, and I waiting there in the chill month of March. On the wall, there was a long horizontal painting of joyful kids in crutches and wheel chairs arriving to the finish line helped by men wearing fez, the red mason hat, which looks like a bucket upside down; it might look a bit funny, but the task that the masonry do is extremely serious; it raises money for the Shriner’s Hospital for Children like this one in Philadelphia, which we were visiting for the first time.

Part of the painting in the lobby of Shriners Hospital for Children in Philadelphia

After filling out forms, we went to the doctors waiting area. We sat in front of a teenage girl, who had prosthetic legs. She was missing her left forearm, and her right arm was almost complete, except that she only had two fingers in her hand. All this didn’t stop her from texting on her cel phone super fast.  When she and her mother stood up to leave; the elevator door, which was about twenty feet away, opened, and the girl ran to hold it for her mom, “Come’on mom!” she said. I was so glad to see that she was just a typical hyperactive teenager.

A few minutes later we were called into the doctor’s office. There was a patient’s bed cover with paper, which Valeria prompted to rip apart; I threw away the mess before the doctor came in, rolled over more paper on the bed, but hurricane Valeria was quick to rip everything apart again, and that was when Dr. Alburger, the foot surgeon, came in. In his early sixties, with silver hair, and a gentle voice, Dr. Alburger didn’t mind the mess. “She’s very strong; she kicks hard”, he said, examining her legs. “Do you have the X-Rays?” he asked. I gave him the CD, which his assistant took away to open up. I also gave him the X-Rays plaques we had brought from Cuba, old school, but effective; he put it against the light box, and saw what Valeria had.

He mentioned the mirror foot, how he was going to operate, and then he added, “On the right foot, I’ll do the surgery on the inside part, so the scar is not visible.” That comment was unexpected because I was more concern on the functionality of the foot, rather than the esthetics, but he was concerned about all the angles, which hinted we were in good hands.

“We can go into surgery anytime; talk to my assistant to set up a day.” He said.

“But we thought we had to wait until she’s a year old.” I mentioned.

“We can do it anytime.” He responded.

After he left, his assistant told us May was opened. She also said, “the surgery will take from 3 to 4 hours. She will stay over night with one of the parents, and will have a cast for 3 or 4 weeks.”

We were happy after meeting Dr. Alburger, and astonished to have the surgery soon. Shriners Hospital had been great, and we still had to meet the hand surgeon.

Valeria is unaware of the harm she has caused to the extraordinary people of Shriners Hospital for Children

We've Found the Right Children Hospital

The first time we heard the term “mirror foot” came from Dr. Miki of the Miami Children Hospital. He also told Natacha and I that he could operate the hands and create the thumbs—which made us extremely happy since we didn't know it could be done—but would have to find a foot surgeon in Miami, who specialized in what we needed. We told him about our wish of having Valeria’s surgery in that city, where we have family, but he made a comment that completely changed the course of our search, “if Valeria were my daughter, I’d take her to Shriners,” he said.

Shiners Hospital for Children is one of the top health care centers in the world, specializing in orthopedics, burn care, cleft lip and palate, and spinal cord injury. They also stand out for their warm hospitality; they showcase that on their website, and after meeting them, we concur with it.

But before knowing them, and right after seeing Dr. Miki, we first focused on researching about “mirror foot” and Shriners Hospital.

On “mirror foot,” we found out how rare the case was; it’s usually associated with different syndromes; fortunately Valeria, who has gone through detailed genealogical tests at the New York Presbyterian Hospital, has shown no positive signs of syndromes at all.

We found also different articles about some successfully treated cases, and one of them called our attention; it was about Hidehiko Kawabata, M.D. Vice President, of the Japanese Society for Surgery of the Hand. We contacted him with a long email, explaining our case as best as possible; he responded with a short and concise line, “I recommend Dr. Scott of Shriners Hospital in Philadelphia.”

From Dr. Kawabata’s email along with Dr. Miki’s strong advice and some research of ours, we realized how important Shriners Hospital was. Now, we had to contact them, and really hope they would take our case.

And they did it.

Valeria and Natacha at the Shriners Hospital for Children in Philadelphia

Getting a Doctor in Cuba

We’ve decided to pass on Dr. Salles excellent option. By continuing our search, an even better opportunity has presented before us in Philadelphia. Getting a doctor in Cuba was a great learning experience, and there are a couple of recommendations that I’d give to anyone asking about this path:

1- Be ready to obey the system
On our second day in La Havana, a nurse knocked at our door. “Are Natacha, Valeria, and Gino Ginocchio here?” She asked in a commanding voice. She asked to see our passports, and when we had arrived and when we were planning to leave. After taking notes, she gave us two pieces of paper. “You must go tomorrow to the polyclinic to get tested”, she said. “Why?” We asked. “To ensure you’re ok; the baby doesn’t have to go.” We were concerned with the test, but we had to go otherwise they’d come back for us or wouldn’t let us leave the country.

The morning after we were at the polyclinic at 7 a.m., waiting in line at the blood test laboratory with about 20 people from Cuba. On the wall, there was a sign promoting healthy eating with images of vegetables. Suddenly an older person in line commented, “Look, they tell us to eat those vegetables, but where do we get them? I can’t find vegetables anywhere.” Another old man agreed with him, saying, “Yeah, all I see available in the street are peanuts; I don’t know where they get all those peanuts from; everybody is just selling peanuts; my neighbor got a job offer in the hospital, but she preferred selling peanuts; she makes much more money like that”.

After an hour, we were called in into a narrow room; the assistant pinched us in the finger with freshly unwrapped tiny metal blades, and got drops of blood on little flat glasses. I asked, “What is this test for?” “Malaria”, she answered, “we have reports it’s spreading in Africa.” Then she added, “if the test is positive, we’ll go to your house tomorrow; if it’s negative, this is it.”

We never heard from them again.   

2- Consider the weather

La Havana is extremely humid, and air conditioning is not available everywhere. Having a cast on with a 90 degrees weather and high humidity could require a lot of sacrifice. I’ve been twice to La Havana; the first time was in April, and I had to sleep with a fan blowing air all night. The second time was in January, and the weather was pleasant with a cooling breeze at night; it’s not the best to lie on a beach chair, but it’s convenient to lie on a hospital bed.

3- Do extensive research.

Dr. Salles came strongly recommended, and even though Internet is limited in Cuba, there’s information I was able to find out about him. Dr. Salles has published a study on the benefits of pyramidal energy; the study was done to a group of 251 people, and the results were positive. He also has published a study on a patient, who grew only one bone in the forearm rather than two, and the successful treatment he followed. I admit that out of both articles, the latter had more impact on me.

I hope these tips help someone interested in getting a doctor in Cuba; we could have treated Valeria's mirror foot in the Frank País Hospital there; it was a golden opportunity. But when looking for a doctor, you have to look for diamonds, and diamonds are not up for grabs on the surface, you have to dig dip to find them.

Valeria, Natacha and I at the Frank País Hospital in La Havana, Cuba

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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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