Mailia's Right Heart Cath Study on 06-13-12 Charts Another Path Forward Toward Her Miracle

June 13, 2012 Sacred Heart Institute Spokane, WA.

Mailia was scheduled back in June to undergo a right heart catherization study with Dr. Carl Garabedian in hopes of finding out where her lung pressures would be 7 months after her last Adult Stem Cell Transplant. This was done in order to ascertain weather or not, she would be at a point to safely undergo corrective heart surgery from Eisenmenger's syndrome.

We packed our belongings and plenty of oxygen to head to Spokane late Tuesday afternoon and settled into a hotel right behind the hospital so we could get Mailia admitted at 6:a.m. the following morning.

After a nice dinner at a little Italian bistro we found, we settled in for the night listening to the cracking of thunder and lightning...with the rain hitting the windows and trees.

While waiting for Dr. Garabedian to come in the following morning, nurses abound getting Mailia ready for her procedure while SteelDust, Max and I waited anxiously to talk with Dr. Carl...with regards to Mailia's procedure and also, took time to snap a bunch of pictures.

Dr. Carl came in and graciously greeted Mailia with much humor and wit...and set the wheels in motion.  He said he would most likely sedate Mailia...in lieu of intubating her but wanted us to know he was going to try a different protocol and was going to add a combination of Nitric Oxide with 100% oxygen and that Mailia would be his first patient ever...to try this new method...to which would act as a "double vasodilator".

We went on to discuss the published video and works of Dr. Randas Batista for Eisenmenger's syndrome on the CTSnet web site and how we were asked by Dr. Joel Dunning of the UK...to leave a comment on Mailia's relationship with Dr. Batista and also the flood of comments that were generated by other heart surgeons, especially one well noted heart surgeon, the head of the International Childrens Heart Foundation, Dr. William Novick.

Dr. Novick recently has done an unpublished study about 36 patients that were treated with high pulmonary vascular resistance (pulmonary hypertension secondary to a heart defect) using the double flap patch for a VSD.  It is our hopes that at some point, Mailia's team of doctors will obtain this new data from Dr. Novick to see if these patients pressures are anywhere in line...with Mailia's current pressures making her a potential candidate for this type of corrective heart surgery.

We then went on to ask Dr. Carl if he would please for both Max, Mailia and I gather all the data today, review it objectively and give his opinion and recommendation to Mailia's current heart surgeon, Dr. Michael Black in Florida...on a path forward in hopes he would find it in favor, of a mechanical fix.  Dr. Carl told us..."that, it what we are looking for".  He told us you know, until that hole can be completely fixed, the pulmonary hypertension will never resolve.

We asked him if we would be able to compare Mailia's pressures from her last cath in 2010 to today's and he assured us we would, that after her procedure we could crunch the numbers to see where she stood.  After asking Mailia to sign the consent forms...since she is now 18 he saw how quickly her heart rate went up and joked with her about SteelDust not signing them and so... left that task, to us.

Dr. Garabedian said he needed to go change into his hospital pajamas just like Mailia, and we asked him to please take good care of her and how very grateful we were to him and how much we appreciate this and to now...get the party started!

I cannot emphasize enough how blessed we feel to have some of the best doctors in Mailia's corner and on her Miracle team.

The cath lab nurses came to fetch Mailia and we followed her to Dr. Carl's new state of the art cath lab that has just been constructed for him and his team. It was almost like comparing an astronaut getting prepped to go on the space shuttle. Thumbs up...Mailia knew what to do. We left the pandemonium and headed back to the room to get comfortable for a bit of a wait, while Max went to browse the gift shop for a Webkinz surprise for Mailia.

After they brought Mailia back in to her room we got her comfortable and drinking lite fluids for a couple of hours until she sounded off that she was hungry.  I fetched her some lunch from the cafeteria, soup and grilled cheese sandwich and more water to re hydrate herself.

Dr. Carl came in later with paperwork in tow.  He compared the numbers generated in this cath report to the cath he did in 2010 and the one from 2006.  In looking at the numbers that Max and I later charted into an excel spreadsheet, we still have numbers (PVR) that are high...but that the were definitely a lot better this time around.

So these current numbers were a nice response to the potent combo vasodialators he used, the 80ppm Nitric Oxide and 100% Oxygen.  He told us she had not improved her baseline conditions but that her "reactivity" has so there appeared to be a significant IMPROVEMENT in her PVR based on these numbers.

He told us he was happy with this outcome and that he would get the wheels in motion to discuss this data with Mailia's heart surgeon and see what Dr. Black thought of these numbers, his impression and what as a team, he thinks we should do next.

We thanked everyone profusely and got Mailia and SteelDust headed out the hospital door to her waiting chariot for the quick trip home. What a beautiful sunny afternoon it turned out to be.  Mailia got home to rest and recuperate and so now we wait to hear from her heart surgeon, Dr. Michael Black and will post another update to this soon.

Love and blessings...

The Goforth's

Mailia's Miracle Finds New Eisemenger's Syndrome Patient in Mumbai, India

Taj-Mahal Photo for Mailia from Hari

2011 found us bringing in the New Year with a beautiful email and greeting from a young man we have fondly come to know as "Hari" who is also Eisenmenger's Syndrome like Mailia, but a world away living in Mumbai India...and with his permission granted...we wish to share his first email to us, with you:

Hi Mailia and her wonderful parents,

My name is Harikrishnan K R. I am 28 years old and am a VSD - Eisenmenger's Syndrome patient. I was diagnosed with VSD at the age of 6 which was obviously beyond surgical stage. Doctor's suggested my parents that there is a chance for the defect (ie, the hole) to close by itself as age goes by. The medical follow up facilities in the country where I live (Kerala, India) was very minimal during my childhood and my family believed the doctor's word of a self future cure. I never had critical issues with my illness apart from panting when I run or walk through slopes and a blueish tinge on my finger nails and lips. I had myself involved in all sort of sports and games despite my physical limitations due to my illness. I had only 2-3 medical follow ups done in my life and I was 27 years old when I felt the first gear change of my illness.

I started coughing up blood due to the high pressure on my lungs. It happened in Feb-March 2010. Ever since then I am in regular medical follow up and now I live in Mumbai, India. I am seeing Dr. James Thomas a famous thoracic surgeon in India. He suggests a heart-lung transplant for me. My condition is getting worse for the past 2 months. I gave up my IT job and started working as an Office Clerk in an Import Company near to my home. Due to a recent hospitalization I'm afraid of losing that job too.

It was during my idle hours in home I started searching on the net for possible modern technics for a cure from my situation. It was during one of those session's I came across "Mailia's Miracle". I felt extremely positive after going through the entire story.

I want to thank from my heart for initiating such an online resource for sharing Mailia's story. In my lifetime I haven't seen a person who shares my grief. Later I found out it happens only to 1 out of 8 Lakh people. Even the right information about this condition is very rare in India. I came to know that my oxygen saturation is only 84-85 only when I was hospitalized last year. Mailia's story gives me hope and light to an extent that cannot be expressed by words. I wish and pray for the well being of Mailia as early and smooth as possible.

With lots of prayer's and wishes for Mailia.

Harikrishnan K R

Harikrishnan "Hari"

So over the course of this past month, we have chatted and emailed Hari back and forth, covering all aspects of potential therapies and research he has inquired about, where it concerns Mailia's journey to be healed from Eisenmenger's.

One was the opportunity for us to email information to his Cardio Thoracic Surgeon, Dr. James Thomas about the path we are exploring for Mailia's future surgical treatments and Adult Stem Cell Therapy.  Dr. Thomas so graciously accepted our communication with him...and we know, Hari is in good hands and we pray, will too...have a positive outcome now and bright future like Mailia.

Adult Stem Cell Therapy is in its infancy in India...but being afforded to those wanting to obtain it.  Hari has a great support system both at home and in his medical team.  Both Hari's parents are Ayurvedic physicians in India...hence, probably why Hari has been able to survive Eisenmenger's well into his late 20's including his practice of daily yoga.  Ayurveda is considered a form of complementary and alternative medicine here in the west.

We encouraged Hari...to do his due diligence and find the means to possibly connect with Dr. Randas Batista down in Brazil so as to work with his heart surgeon with a possibility that might afford Dr. Batista to come to India to help him.  We also encouraged Hari to start a web site and blog to start documenting his incredible journey, so as to help others in his region and country.

We humbly ask all of Mailia's followers to please send prayers and blessings to Hari...he too, is so diserving of our love and help.  Thank you Hari...for finding Mailia's Miracle!

Namaste...

The Goforth's...Max, Andrea & Mailia



In Gratitude For Mailia's Miracle Phase 2 & 3 We Trust Will Unfold Beautifully

Phase 2 and Phase 3 you are asking?  Well yes, Phase 1 we considered the journey in finding all the players and team so to speak, that would catapult Mailia to have her first treatment with adult stem cells in Florida and the Dominican Republic. 

But...so what has happened since Mailia's stem cell transplant this past June?  This is where I will begin explaining what has transpired and hopefully bring everyone up to speed...with an update I have so wanted to share this weekend.

About a month ago, I decided to drop Dr. Randas Batista, who is a heart surgeon from Brazil, a quick hello and update on Mailia.  He told me that the 30 year old female Eisenmenger patient he operated on last year in Syria, was doing well and getting married and that he would be attending the 3rd Razavi International Cardiovascular Surgery Congress in the city Mashhad Iran October 5-8 and extended an invitation to Dr. Black and I...to come see his procedure first hand.  I replied back to him and also to Dr. Ahmad Rajaii-Khorasani that I was thrilled and grateful for the invitation, but after checking flights, costs and logistics, there just was no way I could do it with our limited financial resources...thinking we must save for Mailia's future procedures although this had great merit for my going and attending, so as to futher document the advantages and benefits of Dr. Batista's procedure in treating Eisenmenger's syndrome...I had to regretfully say that I could not go.

So after taking Mailia to California for her 3 month follow up appointment to see her other Cardiologist Dr. Popper, we waited with great anticipation during this past month, to see what he and Mailia's heart surgeon, Dr. Michael Black would recommend as far as a surgical option or path forward.  Bare in mind, Eisenmenger's syndrome is a condition that has no viable medical fix curently here in the US, only double lung and heart transplantation which has never been an option for Mailia per many doctors recommendations and expert medical opinions.

While waiting for direction from California...Mailia had a scheduled followup appointment last Wednesday with her local cardiologist Dr. Carl Garabedian from the NWCCHD in Spokane, Wa. He was happy to see her, and asked how she was doing.  We told him she was doing much better, but that after a month, we were still in limbo with our team down south...as to a path forward.  He excused himself for a moment...and disappeared out of the room only to return 5 minutes later, saying he had made a call to Dr. Black, and discussed Mailia and wanted to know Dr. Blacks and Popper's plan for her and also if it might not be best to perform a new right heart catherization to measure her pressures and get good data, if she will be able to go forth with the banding of her pulmonary artery...or, the placement of a double flap patch to her VSD or...a RVAD or ????

Dr. Black felt this was a good idea and said to proceed with the cath.  We thanked Dr. Garabedian and headed home, feeling anxious but relieved that we were going ahead with additonal testing to validate her potential surgical procedure(s).  Mailia of course...was oh No...not again!

The following day, I placed a call into the NWCCHD to make Mailia's appointment and while waiting to hear back from them, decided to touch base with Dr. Zannos Grekos of Regenocyte, who performed Mailia's initial stem cell transplant in the Dominican Republic.  I mentioned to Dr. Grekos that we had a plan now, and that was to have Mailia go through another right heart cath so a decision could be made on if or when, she could have her initial heart surgery.  He asked me...to tell him, how she was doing.  By that...he meant, what do you see that is different?  I told him...that Mailia has more energy.  Her oxygen saturations have not changed, she still requires oxygen but she has more energy.  He asked again, but to what extent...would you say, a 10%, 30% or 50% improvement overall?  I told him that I felt she was about 30% and that was conservative.

Dr. Grekos told me..."You need to tell her doctors that, and hopefully this will be the conduit to giving us the go ahead to band her PA, but I still think, she is going to need a second round of stem cells".  I asked Dr. Grekos, this question:  If after Mailia has this upcoming right hearth cath, and they then decide to go ahead as planned with banding her PA...how long after this, should she have a second round of stem cells?  Dr. Grekos said...that after 6 weeks post surgery, allowing enough time for her to heal, she should benefit from having her second round of stem cells.

Great!  Wow!  Okay...

So now, I feel a whole lot better, but still a little perplexed about the potential nay-saying and concern surrounding the PA Banding or double flap-patch or RVAD.  Dr. Black, has not yet sold the IRB (Internal Review Board) of his hospital, on the idea of treating one very special patient with this modality.  Has never been done for a VSD successfully...at least with a stem cells backup...but it has been done, abroad of course.

So here I go again, my top guns who I lovingly and fondly call my angels, prompting me to contact Dr. Ahmad and Dr. Batista once again, before the conference next week in Mashhad Iran.  I told them I was so grateful for their gracious invitation but would not be able to come to witness Dr. Batista's operations nor be able to validate the one Eisenmenger patient he operated on last year who would be in attendance at the conference to give her testimonial of her healing miracle.  And if they could please share their clinical data or videos on their presentations with us and Mailia's doctors.

Dr. Batista wrote me back, as did Dr. Ahmad Rajaii-Khorasani and said that it was handled.  Dr. Batista forwarded an email to me that he received from Dr. Joel Dunning from London England, who is planning on attending the conference in Mashhad Iran and will be interviewing Dr. Batista, for a series titled "The Giants of Thoracic Surgery" to be featured on CTSNet which is the World's Premier Website for Cardio Thoracic Surgery!

Of course, I quickly emailed back and thanked them and quickly emailed Joel Dunning to ask humbly if he would be able to focus more on questions relating to Eisenmenger’s syndrome and how and why Dr. Batista believes that banding the PA is so important to a patients regression of the disease and HOW this can be accomplished?

I explained our situation, and the need for more clinical data to substantiate Dr. Batista's stance on banding the PA in Eisenmenger's syndrome and also gave him Mailia's web site and blog in hopes, that he would agree to document not only the interview, but his patient as well.

Well, bless his heart, Dr. Dunning graciously replied to my e-mail and said the following:

I have already seen your website in my research for the interview. Do not worry. I will be putting this interview on the front of CTsnet the worlds biggest cardiac surgery website.

Wow...!  I emailed this to Dr. Black in California and he too...said "The more information for the IRB...the better!

So this is where we are at.  We have confirmation that Mailia is scheduled for her next right heart catherization procedure on November 2nd up at Sacred Heart Medical Center in Spokane, Wa.  Next we will hopefully get a path forward on Mailia's surgical procedure(s)...this herein, reflects what we have termed Phase 2!

After Mailia's procedure, we will figure out the logistics for another round of stem cells for her.  This will eventually be her Phase 3!

How will we fund all this?...I am chuckling right now because I truly don't have a clue but you know what?...We trust...and we have faith!  It will happen and it will all unfold beautifully!

How did we luck out?...I am humbled and intrigued at the incredible team of doctor's and surgeons we have assembled but credit a higher power with this blessed and unique opportunity for Mailia.

Our heroes of medicine, those unique individuals who in their communication tell me "Not To Worry" my God, I have so much faith and admiration for the lot of them.

Thank you good doctor's!  We love you and appreciate all you are doing for Mailia and her Miracle of healing.

Dr. Batista, Randas - Curitiba, Brazil

Dr. Black, Michael - California Pacific Medical Center

Dr. Garabedian, Carl - NW Center For Congenital Heart Disease

Dr. Grekos, Zannos - Regenocyte

Mailia’s 3 Month Follow up in Crescent City, CA., Various Dr.’s Viewpoints and One Happy Tiger Cub

What a month it has been dear ones, since our last post…mostly, what a blessing to see Mailia getting stronger by the day and enjoying her new found energy. We cannot believe she is the same person from just 3 months ago. Prior to her adult stem cell procedure, she was lucky to walk from the living room to the bathroom without getting short of breath, but now…we have witnessed her having the stamina to pick up her heavy E tank of oxygen and walk out the door to our vehicle without passing out!~

We try to encourage her to still pace herself and to refrain from over doing it…for we know how she so wants to be free of the oxygen and constraints the pulmonary hypertension brings, but we also want the stem cells to keep building and helping her lung vasculature to the point where she will be able to tolerate surgical repair to her heart.

Regenocyte has charged us with follow ups for Mailia at 3 month intervals…so in light of her having her baseline ECHO done in San Francisco by her future heart surgeon, Dr. Michael Black…Dr. Black afforded us the opportunity to meet Cardiologist Dr. Robert Popper, who is also from California Pacific Medical Center, up at their satellite clinic at Sutter Creek Hospital in Crescent City, Ca. This saved us having to drive all the way to the S.F. bay area…and Max once again, fired up the Mailia’s Miracle mobile and loaded us up…for a much shorter trip and adventure than the last road trip we just made this summer in taking Mailia to Florida and the Dominican Republic.

We left at the crack of dawn this past Thursday and 10 hours and 543 miles later, we arrived into northern California’s Crescent City…after a beautiful and scenic drive through southern Oregon and some gorgeous stands of old growth Redwoods. We checked into our hotel, had dinner and set Mailia’s Wii up much to her relief…the TV was accommodating for this.

Friday morning we ventured out to find the hospital and got there an hour and a half early not knowing what to expect, other than getting Mailia in for an ECHO. Dr. Popper’s assistant Darlene had been trying to reach us for a couple of days to see if we could in fact, come in earlier because like us…Dr. Popper travels up to the Crescent City hospital every 3 months for 3 days…to see his long standing patients…and drives the 15 hour round trip…every time. Plus…Dr. Popper is no spring chicken…he is 80 years young and still going strong!

We were met by a gracious and spirited technician by the name of Randy who took charge of getting Mailia all set up for her ECHO. It was a pleasure to be able to discuss with him, about Mailia’s recent journey to the Dominican Republic and he was very interested to learn about her treatments and what is forthcoming for her. Unfortunately…he was not able to get very good views of Mailia’s heart in the room where we found ourselves initially…so he asked if we could remobilize Mailia in the hospitals imaging department where they were better equipped.

After 3 hours, we finally finished up with her ECHO and Dr. Popper came in to check all the various views and stats…he asked a few questions about Mailia’s initial diagnosis, how many caths she has had and previous treatments. When I mentioned about the stem cell therapy she recently underwent, similar to Cal’s…he said, I am going to say something but do not want you to take it personally. He asked if I had ever heard of a heart surgeon back in the ’60 who used to close VSD’s with high pulmonary resistance and how he lost every single one of them. I told him no…but that yes, we are aware that closing Mailia’s defect might be contraindicated at this point…that what we are truly looking and hoping for is a means to facilitate her lungs to further heal…not only with the stem cells, but with a mechanical means such as banding her pulmonary artery, or applying a double flap patch on her VSD…or even, a RVAD to help offload her lungs and relieve her heart…giving the stem cells more umpf to help regenerate her lung vasculature…so that later, as her pressures really come down…to safely and permanently close the VSD.

He said after I conveyed this…you are right on!

So…now we wait a few more days for Dr. Popper, in all his wisdom and experience to review Mailia’s ECHO results at 3 months against her baseline ECHO so he, along with Dr. Black can decide a path forward for Mailia. We trust both Dr. Black and Dr. Popper to find a workable solution and path forward and look forward to really doing some serious discussions here shortly.

This brings me to a related case in point. Wow…another incredible sign divinely sent…that we are on the right track.

Last week, I received an email from Brazilian Heart Surgeon Dr. Randas Batista with new photos of his hospitals construction, still in progress with interior fitout. He also told us that a young girl with Eisenmenger’s from Syria, who he had banded last year, was doing great now, confirmed by the attending heart surgeon, Dr. Ahmad Rajaii-Khorasani from Mashhad Iran with the following:

Hi Dear Randas:


The girl who had PA banding is now doing great & she is getting married soon. I have two other patients for this year .One VSD and the other one PDA.


I have asked the nurse who took care of your patient in the ICU to get her case ready to be presented and the patient will also be invited to come to the conference and answer any questions. Love you man. Looking forward to see you here. Thanks Ahmad

I am hoping to make contact this week, with Ahmad and ask if he would also send us and Dr. Black their published work and findings pertaining to this young woman. Now granted…she did not have stem cell therapy, but as I have believed and said all along, the lungs and body can heal…given the right elements. I pray they will continue to find ways to help improve their patients lives and outcomes…to that extent, I pray for all our world healers and physicians that they too, continue to find ways to help afford positive healing.

Mailia chanted her wishes repeatedly to see a wildlife safari in route to our next evening stop before our long leg home. We were going to spend the night in Bandon…by the sea and so tried to make our way north on hwy 101 along the coast. We got to the Wildlife center about 35 minutes before closing and Mailia was so thrilled to see adult leopards, lions, tigers and their beautiful babies. Mailia even had the opportunity to pet some little black leopard babies and also bottle feed a gorgeous baby Bengal tiger cub. We were so grateful to the staff there…for allowing Mailia this amazing experience…one she will never forget.

We ventured into Bandon and found our hotel near the beach…a gorgeous place with a beautiful setting and view. The next day…we got up early…loaded up after a quick breakfast and high tailed it home, in time to meet our wonderful and incredible friend and family member…Ramona, who without her help caring for our home and critters…we would be hurting in a big way. She hugged and kissed Mailia and ran out to her car to head home and then to the hospital…as her second daughter was going into labor with her first grandson. We are so blessed with Ramona…and grateful for all her love, support and help.

After a quick accounting of all our fur kids…we headed to Dust Devil Stadium for Mailia’s baseball fix for the evening.  She is pictured here, one last time with two wonderful men and brother's who met Mailia last season, Dale Moe from Delaware and Duane Moe from Kennewick, Wa. and who are part of her miracle. Only one more week of baseball left now…as fall is quickly approaching and Mailia is feeling the anxiety of summer’s end once again. I think…we all have a greater appreciation of our daily lives and the events that are beautifully unfolding before us.

It is time to get busy again…staying focused and requesting much needed and appreciated help to continue fundraising for Mailia’s next big step and procedure and to continue however we can…to help others to do the same.  We will keep everyone posted, as soon as we hear from Dr.'s Black and Popper on Mailia's next path forward.

We thank everyone for their continued support and prayers...we are so very grateful and humbled.

Love and blessings...
The Goforth's