tetrology of fallot

I know Tamara for years.  She has been through, and continues on, quite a journey with her amazing son Mateyko, who was born with Tetrology of Fallot.  I wanted her to share some of that journey in hopes that myself and others may gain glimmers for our own healing paths.  Thank you Tamara. – Denise (HH)


HH:  Give us some background on what health challenges you and your family face? 

Mateyko was born in 2002 with a congenital heart defect called Tetrology of Fallot.  He underwent open-heart surgery at age 2 months to correct some of the defects.  He developed sick sinus node syndrome at 3 years of age and had a pacemaker implanted.  He had his pacemaker replaced in 2011 due to the pacemaker leads to his heart crumbling and breaking.  He has several other heart issues and will need cardiac care his entire life.

Mateyko also suffers on occasion form migraines, photosensitivity, & dyslexia.  He was receiving PT at age 6 month due to crawling issues.  He has been in speech therapy since the age of 3 due to low facial tone, vocal tone and intelligibility.  He received OT (occupational therapy) from the ages of 3 to 6.

HH:  What lead to you alternative healing modalities?

I had always been into alternative healing methods.  Personally I had benefited from chiropractic and acupuncture care for many years for lower back issues.  I also experienced anxiety and PMS, but alternative methods did not seem to always “work”.  I finally resorted to taking Zoloft.  Unfortunately, I got pregnant and did not stop taking Zoloft until several months into my pregnancy (did not know I was pregnant).  Currently, there are several major lawsuits out there suing the makers of Zoloft in its link to congenital heart defects, specifically Tetrology of Fallot.  This is a burden of guilt I will have to live with forever.  Because of this, I’ll always pursue every alternative, safe healing modality possible before resorting to prescription medication.  I appreciate and respect the Western medical profession, but it’s by far from perfect and has more questions than answers.  Western and Eastern modalities MUST work together.

HH:  What alternative approaches have you tried?  Currently using?

Currently my family uses chiropractic, acupuncture, massage therapy, herbal supplementation, essential oils, reiki, ayurveda and whatever else seems to cross my way.  I practice yoga & meditation on a regular basis and take long walks.  I garden and spend time with my family.  I swear by kefir and kombucha.  I abstain from all drugs and alcohol, do not believe in crazy diets or heavy exercise (no 6 pack abs here!) and everything in moderation.  I avoid processed foods at all costs.  I believe in warm cups of herbal tea with local honey and indulge in homemade chocolate chip cookies on a regular basis.
I also believe in early childhood intervention strategies.  Mateyko was receiving “services” by age 6 month for oral motor issues, and other physical developmental issues.  He continues to receive speech therapy.

HH:  What are some of the criteria you use for selecting a practitioner/practice? How do you define your expectations? Have those practitioners/practices always met your expectations?  Can you give us an example?

I have to trust the practitioner.  If they appear healthy and well balanced, then there is a reason for this.  I need someone who is open and honest, who is willing to listen to me and who is OK if someone in my family may need an antibiotic as a last resort.  I have been to chiropractors who are very “unhealthy” looking and have lectured me on my “bad” habits.  I cannot go to someone who doesn’t practice what they preach.  And once again, honesty and integrity are crucial.

HH:  How do you decide when it’s time to move on to something else?

At times, the treatment becomes stagnant.  That is a hard thing to describe, but listening to one’s mind & body is crucial. I’m also not afraid to try new things, as long as it is not touted as a “cure all.”  One needs to be a very cautious consumer. For example, I saw a practitioner once who insisted that I try enemas.  For many people, this may be the thing.  It wasn’t for me….and I stopped going to them.  If someone is going to pressure you to do something that you are just not comfortable with, then they are not listening to YOU.  Just as you should listen to your body, so should your practitioner listen to you.  Anyone who won’t listen to you fully should absolutely be avoided.

HH:  How have you integrated that with your western/allopathic doctor/consultant?

The best example I can give of integration between the two modalities is my story of my son’s last surgery.  When he had his pacemaker replaced 2 years ago and we had worked with our acupuncturist.  We had seen him several times the week before his surgery.   Our big concern was pain management.  Mateyko’s pain was completely managed post operatively using acupuncture.  He only had ONE dose of Motrin in the hospital and that was because the nurse insisted on giving it to him.  After that, we gave him ONE dose when he got home (because we were told we HAD to).  He didn’t want it, insisting he was not in pain.  That was the last dose he took.

HH:  What advice would you give others on a healing journey?

Listen to your heart, mind and body.  Listen. But don’t do anything you are uncomfortable with and beware of angry fanatics who claim to have a cure all.  One must integrate what works for one in whatever situation they are in at that specific time.  Life constantly changes, so should your approach to life.

HH:  I also want to talk about music briefly – as a therapy?  What have you observed music’s role is in your family’s healing process?

Ahhh…music as therapy…..

My first recommendation is two must read books on music and the brain are This is Your Brain on Music by Daniel Levitan, and The Music Lesson by Victor Wooten.

If you trace back my journey with my son, it is unbelievable to some that he has emerged as a gifted musician.  Despite so many odds from an early age, he has developed a voice through music.  Music has provided him with a peace of mind and I am witness to the healing power of the vibrations of the tones and rhythms that are part of his daily life.

Music has been a long journey for us, and contains too many details to list as to how we got to where we are at.  In a way, the details are not important – everyone has to have their own journey when it comes to music.   Music has provided one more healing modality for my child, and hence, for me.  For Mateyko it has provided him with a voice to express himself.   It’s a complete outlet for stress and creativity – like a gift from Apollo.

For me, music enables connections with amazing people – top professionals in the field, some of the most real and genuine people I have come across.  These connections allow me to help share Mateyko’s gift of music, through mentorship and performances.  Music has really become a natural way of life.