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Mailia’s Mysterious Illness

Mailia is a beautiful young lady who lives her life “in the moment” and enjoys it to the fullest.  She has so much to offer the world.  Although Mailia has always been considered a person with special needs, I and others who know her understand that she is, rather, a special person serving our needs.

Our daughter was an angel from the very beginning. When I was pregnant with her I knew she was special and would touch many people's lives, but I didn't realize how right I was.

One day in early 1999, Mailia became very ill after a family vacation in the Bahamas.  She was diagnosed with a respiratory virus she had caught on the cruise ship.  The doctors thought it would resolve but after several weeks of treatment, she did not rebound.

We took her to see a pulmonary specialist because her oxygen saturation levels were not normalizing.  When he suggested we go home, keep her on oxygen for six more months then return for a checkup, we refused. Knowing her case of bronchiolitis should have resolved in three weeks – unless there was some underlying issue with coronary heart disease – we insisted she been seen by a cardiologist … right then and there.

The Diagnosis – Eisenmenger’s Syndrome

To make a very long story short, we learned that Mailia suffered from Eisenmenger’s Syndrome – a secondary pulmonary hypertension due to an uncorrected (VSD or ASD) heart defect. 

She had a procedure called a heart catheterization (cath) after it was discovered that she had a large gaping hole between the left and right ventricle in her lower heart chamber. We assumed this could be fixed but to our dismay, the heart cath procedure confirmed that it was beyond repair.  The high pressures in the lungs had already done so much damage that a procedure to close the hole could be fatal.  Short of a double lung and heart transplant, there was nothing that could be done.

My husband and I were devastated!  At first, I just wanted to run away and hide. I was in total shock, alternately numb and full of a pain that was almost unbearable.  How were we going to cope; why had this happened? 

After a week of grieving, my husband and I kicked into another gear – we  decided to take our baby for a second opinion.  We left our home in Santa Fe, New Mexico and headed for Denver, Colorado to seek the expertise of two heart doctors at Denver’s Children’s Hospital.  They reviewed her medical records and advised us against a transplant – doing so would only buy Mailia a short time.  They said they had seen children with Eisenmenger’s Syndrome live into their late teens and early twenties with no medical intervention.  Their recommendation?    Keep her on oxygen therapy, move her to sea level to buy her some time and wait for technology to catch up. 

New Homes, New Treatments

So we did just that.  We sold our home, left our jobs and found a place for Mailia on the west coast, at a lower elevation.  We wound up coming to the Tri-Cities of southwestern Washington state, swapping the 7,200 ft elevation of Los Alamos for a new elevation of 400 feet.  Although we didn’t see much difference in her physically, she wasn’t getting worse.  Her doctors in Denver made it a point to stay in touch regarding any new or experimental treatments for pulmonary hypertension.

Two attempted treatments for Mailia involved a trial drug study of Tracleer and very high doses of a form of Viagra, but neither of these worked for her; in fact, both of these potent drugs left her with some troubling side effects.

At this point, we started looking into alternative treatments in order to slow the progression of her condition.  We have tried everything from Shamanism to faith healing, herbs and supplements to chiropractic treatment, acupuncture to yoga, and bio feedback/energy work. We finally realized short of a miracle and a mechanical fix to her problem, she was not going to be healed. 

Dr. Batista – Mailia’s Savior?

Then we found Brazilian heart surgeon, Dr. Randas Batista, who has been seeing wonderful results from banding the pulmonary artery in his Eisenmenger’s patients.  Due to medical and legal constraints here in the states, it was not possible for him to come stateside to help her. This treatment option is not widely accepted at many heart centers here in the U.S.  We are waiting for that to change. 

We believe that Dr. Batista has the right idea and trust that, in our pursuit of the right conduit to bring about her healing, it will all unfold at the right time and right place.

We are also investigating the possibility of robotic surgery for heart surgery.  It would be minimally invasive to band the Pulmonary Artery this way rather than having to cut open the chest and split the breast bone, something that would take much longer to heal.  Right now, robotic surgery is in its infancy and we hope great strides will be made in the near future so new procedures will be added.

Stem cell therapy is another avenue we are pursuing before and after the banding to afford better healing along with other medical therapies her doctors might recommend.

We don't know what the future holds for our daughter, but Mailia continues to cope with her condition and we continue to search for a healing miracle.  I am just a parent who wants to be able to give my daughter a chance at life.  I am no different than any other parent; I just have a bigger battle to fight.

Mailia’s Miracle – a Resource

In coping with this I have recognized that there is very little publicity, research and information about Eisenmenger’s Syndrome.  Because of this, we would like to make Mailia’s Miracle a resource for:

  • assisting others who are dealing with similar situations
  • helping the Batista foundation and others raise the profile of Eisenmenger’s
  • improving communication, and
  • encouraging new research and potential treatments into the disease.

It is a huge task and will take time and a lot of energy, but with a little work and God’s help, I believe that it can be achieved.  

The Miracle that is Mailia

Back to Mailia … I would say that she has had good quality life, certainly much better than I ever thought possible in those early days.  She has limited physical stamina and is still on oxygen 24/7, but she is happy. She loves life and life loves her. She is my ray of sunshine; she makes me cry at times but most of all she makes me proud to be her mother.

Mailia has attended home school most all her life.  She is currently in her sophomore  year at an online virtual high school and maintains a 3.65 grade point average.  During the fall and winter months, Mailia is pretty much homebound and likes to spend time with her animals and enjoying spurts of creativity and another love, photography.  But during the summer months, outdoor activities are fair game.

Mailia is an avid Minor League Baseball fan.  Every year we try to sponsor and host a player in our home for the season.  Mailia and her little service dog SteelDust – with oxygen in tow – are adamant about attending every home game to bring the team luck throughout the season. 

Mailia, with our encouragement, has also started down a path to balanced life harmony by encountering as many people and opportunities for growth as humanly possible.  She has participated in several seminars … one being Enlightened Warrior, which opened up a huge Pandora’s box for our family but truly blessed us and others in so many ways.  It is a story worth telling someday, but due to confidentiality, we cannot divulge what is involved.  I can tell you that she saved a young man’s life while there. Her inner beauty, courage, humility and kindness free her to consent to everything God has designed for her.

Whether acting or artwork, she loves the arts and learning new things that can inspire.  She is currently working on several wildlife paintings that will become available in lithographs to benefit her therapies.  Also Mailia recently completed a painting of the Taj Mahal and hopes to sell this piece and forward the proceeds to one of her favorite charities in Costa Rica – a sanctuary for sloths. It has become Mailia’s dream and vision to someday operate and care take her own Wildlife Sanctuary in Costa Rica. 

Costa Rica … and other Blessings

It breaks our heart that Mailia must remain “homebound” seven months of the year because of the extreme cold – a necessary sacrifice in order to keep her at a virtual lower elevation and in an area with relatively clean air quality. Our plan is to someday relocate to beautiful Costa Rica.  Costa Rica would enable her to be out in fresh air and sunshine year round, and to further heal and thrive like the blossoms that so sweetly scent the air there.

This life experience has taught us patience and to enjoy what time we have together. All the clichés we have all heard before: "Life is short.”  “Don’t give up hope.”  “God only gives us what we can handle” etc. have new meaning. We have learned to appreciate the blessings we have – the greatest being Mailia.  She is truly “a miracle” to us.

I would be remiss without thanking the many who have aided in Mailia’s care and shared in her life up to this point.  We are in a constant state of gratitude for each one of you and your gracious acts of altruism!