Posted by Makala Johnson (@makalajohnson) · Feb 18, 2011
A Miracle for Daniela
Photo: Daniela, pictured top left, enjoys time with her brothers and sister at our home in Ecuador after her procedure at Mayo Clinic.
Written by her parents, Juan and Victoria (Ecuador):
My wife Victoria has always believed in miracles. I also believe in miracles, but I thought they only happened to somebody else, not us. After all the events that led to our daughter’s successful heart operation at Mayo Clinic, I am convinced that miracles do happen to ordinary people like us.
Our daughter Daniela, 12-years old, was born in Ecuador with pectus excavatum, a type of chest wall deformity that causes her chest to appear sunken. Severe cases can impair heart and lung function, but in Daniela’s case, the deformity was considered only cosmetic. That changed in 2009, when doctors encouraged us to have Daniela checked for Marfan syndrome, an inherited disorder that affects the connective tissue that anchors organs and other structures in the body.
We decided to try to take her to a U.S. medical center for evaluation. While researching medical centers, my wife Victoria got an e-mail from the National Marfan Foundation with information about an upcoming Marfan Conference at Mayo Clinic in Rochester, Minnesota. She told me that she had a hunch that we should go to the Conference at Mayo Clinic, so we registered for the Conference.
Searching for Answers at Mayo Clinic
When we arrived at Mayo Clinic, nothing could have prepared us for the feelings of peacefulness that filled our hearts as we entered the beautiful Gonda Building. We could hear a piano and a chorus, and we could not believe we were at a clinic. We just felt that God had led us to the best place in the world to care for our daughter.
Daniela underwent several tests during the week of the Marfan Conference, including an echocardiogram that showed an enlargement of her aortic root. The aortic root is the segment of the aorta and its valve that emerge from the left ventricle in Daniela’s heart.
Daniela’s enlargement was just borderline for surgery in a typical Marfan syndrome patient, so we met with Dr. Joseph Dearani, a pediatric cardiac surgeon at Mayo Clinic, who explained the surgical procedure that Daniela might need in the future should the enlargement worsen.
After going to several informational sessions as part of the Marfan Conference, we began to wonder if Daniela was suffering from Marfan syndrome or the rarer Loeys-Dietz syndrome. Loeys-Dietz syndrome is a genetic condition similar to Marfan Sydnrome, but we learned that it carries a higher risk of aortic aneurysm and aortic dissection. To confirm which syndrome Daniela was facing, samples of her blood were sent for genetic testing.
Four months after we returned from Mayo Clinic, we found out that we were expecting a baby. And one month later, we got the results from Daniela’s genetic test – and our world collapsed. The test confirmed that Daniela had the less common Loeys-Dietz syndrome.
Since aortic dilatation in Loeys-Dietz syndrome is more prone to rupture and dissection than in Marfan patients, Daniela needed more immediate heart surgery. She needed a valve sparring aortic root replacement, which is a delicate open heart surgery successfully performed in only a handful of medical centers in the world, requiring very skilled heart surgeons.
We wrote to all the hospitals that performed the procedure, asking for estimates and financial assistance, including Mayo Clinic as our number one choice. Kate Welp, a nurse from Mayo Clinic who had given us her e-mail address after the Marfan Conference, helped us refer Daniela’s case to Dr. Allison Cabalka, our wonderful pediatric cardiologist at Mayo Clinic, and Dr. Cabalka applied for a charity waiver for our case.
Meanwhile, we visited every charitable organization in Ecuador, as well as all the public medical institutions in Ecuador asking for their help. We were hopeful that our government assistance program for catastrophic diseases would be able to help us fund our daughter’s surgery, but after weeks of paperwork, they finally told us that they do not have the funds to help us.
We were devastated, but the very next day we got a call from Mayo Clinic telling us that Daniela could have the surgery at Mayo! My wife Victoria and I will never forget the moment we found out Daniela was having surgery at Mayo. We could not stop our tears of joy as we knew in our hearts that everything was going to be fine, that our daughter will have her life saving surgery at the best place in the world.
We then received by mail excellent information about Rochester, Mayo Clinic, and heart surgery. We even got a DVD in Spanish telling children what to expect for their surgery, for Daniela to watch, as well as coloring and activity books to help prepare her for surgery.
Returning to Mayo Clinic for Surgery
We arrived in Rochester on Mother’s Day of 2010 with Victoria, six months pregnant, and with both of us ready to have our 11-year old daughter finally get her heart fixed.
One of the nurses we had met during our previous visit, Caroline Arpin, was so kind as to accompany us during her day-off throughout Daniela’s entire itinerary of medical tests before surgery. We also got on the Ronald McDonald House’s waiting list for family housing and we were so fortunate to get accepted the next day. The Ronald McDonald House became our home away from home in Rochester.
We also took Daniela to the Patient Education Center at Mayo Clinic and received a wonderful presentation by Jane Heser at Child Life Services about surgery and especially what to expect and what to do after surgery to have a better recovery. After the presentation, Daniela felt more at ease with her upcoming surgery.
On the day of surgery at Mayo Clinic’s Saint Mary’s Hospital, everybody was so very kind and considerate with us. We got to be with Daniela during all the preparations before surgery, and Victoria got to go with her until Daniela fell asleep (after receiving a bubble gum-flavored anesthetic and hugging her stuffed animal that “stayed with her during surgery”).
The last words Daniela said before going to sleep where: “I love you Mommy.” At that point, Victoria could not hold her tears, but she was sure everything was going to be fine, and she felt better seeing that Daniela was so calm.
Recovering with Dr. Jack and the Dalai Lama
Surgery went well, and not only did Dr. Dearani fix her heart, but also Dr. Harold Burkhart, her thoracic surgeon, fixed Daniela’s pectus excavatum. We cannot put into words the confidence and peace that doctors like Dr. Dearani transmit to patients and their relatives.
Daniela woke up after surgery to see that her stuffed kitty was still by her side. We cannot describe the feeling that we, as parents, had when Daniela started to breathe again without the help of the respirator. It was like seeing her being born again.
Recovery was tough, but all the nurses at the Intensive Care Unit, and the cardiac surgery recovery rooms where true angels. They were not only remarkably knowledgeable in their medical field but also the kindest of human beings we have ever met. We could not believe that Daniela had a nurse only for herself!
During our stay at Mayo Clinic’s hospital we saw the hospital helicopter take off several times, and it really felt like a place out of this world, made for millionaires and celebrities. Children patients could even ride in the helicopter at a scheduled time during the week. One day we saw a huge crowd gathering at the entrance of the hospital – it was the Dalai Lama coming to Mayo Clinic for his medical check-up. We kid Daniela that even the Dalai Lama had come to visit her, but, truthfully, we could not believe that our daughter was receiving medical care at the same hospital as such an important and inspiring world leader - someone who can choose any hospital in the world.
A Chance Encounter at Alcatraz
A few days after Daniela’s surgery, our Mayo Clinic nurse friend Kate Welp, who had been instrumental in arranging Daniela’s surgery at Mayo Clinic, traveled to Ecuador with a wonderful group of nurse volunteers as part of Kate’s charity in Ecuador Hands for Humanity. One day, Kate and her team decided to have lunch at a local restaurant, but oddly the restaurant was closed, so one of the local volunteers suggested going to Alcatraz, a small family restaurant nearby.
A woman named Edna runs that restaurant, and when Edna saw the group of nurses, she asked them, “Where are you from?” Kate and the volunteers responded that they were from Mayo Clinic in the United States. Edna remarked that her granddaughter had just undergone surgery at the Mayo Clinic. By pure coincidence, Kate – who had been instrumental in organizing Daniela’s surgery – was standing face-to-face with Daniela’s grandmother! The two women hugged as tears of emotion filled their eyes. “In that moment,” Kate said, “I knew, I was certain, that Daniela and Mayo Clinic were meant to be in each other’s lives.”
Of course, Edna made sure that lunch was “on–the-house” for this special and unexpected group of Mayo Clinic guests. And, upon their return to Mayo Clinic, Kate and all the nurse volunteers visited Daniela constantly – they even took her to the movie theater and gave her a nice birthday party when Daniela turned 12 just before our return to Ecuador.
Photo: Nurse Kate Welp with Daniela's grandparents Edna & Santiago at Alcatraz restaurant in Manta-Ecuador.
A Piece of Mayo Clinic in Ecuador
Just one month after our return to Ecuador, Victoria gave birth to a beautiful and healthy baby boy. Daniela can now play again with her friends, do physical activity classes at school, and most of all, she can carry her baby brother in her arms without fear that her aorta might rupture. As we finished the year 2010 and looked back upon all the blessings we received during that year, we can only thank God for placing Mayo Clinic and its wonderful people in our path.
Our story with Mayo Clinic does not end there. We were fortunate to see a Mayo Clinic Information Office open in Quito, Ecuador this January 2011. We had the privilege of sitting in the front row at the reception called “A Night with Mayo Clinic.” It is so nice to feel a part of Mayo Clinic so close to our home. As we listened to other patients share their wonderful Mayo Clinic experiences at that event, it reinforced our conviction that Mayo Clinic’s extraordinary way of caring for its patients is not an isolated event, but a philosophy deeply rooted in its entire organization and staff.
Photo: The family attending "A Night with Mayo Clinic" for the opening of Mayo's information office in Quito, Ecuador, in January 2011.