It’s a fact of life: none of us are born perfect. In our house, we teach our children that everyone is born with “something special.” Maybe it’s deafness or a cleft palate; maybe it’s Down Syndrome or Autism. In the case of my daughter, Nadia, it’s the special gift of being born with a congenital heart condition known as Hypoplastic Left Heart Syndrome.
Essentially, HLHS means that Nadia has “half a heart.” Yes, I know, that poses a bit of a problem. How does she live?
Thankfully, the incredible team at Children’s Hospital of Orange County (CHOC), including cardiologist, Michael Rebolledo, MD, and cardiovascular-thoracic surgeon Dr. Mark Bleiweis, MD, knew what to do. After going through a three-staged reconstructive surgical plan, Nadia not only lives, she thrives!
That’s not the case with all HLHS children. As a Naturopathic Doctor (ND) I’ve been both a resource and a doctor for several families of children with congenital heart conditions. Some are doing relatively well; some are struggling; others sadly, did not make it.
My role with these families is as an expert in natural therapeutics. I help them create an integrative medical circle, working towards optimal outcomes for their children. Ongoing, coordinated, multidisciplinary care can make a world of difference for families struggling with a lifelong, highly complex condition.
Organizing Dream Teams
Teambuilding can be a challenge. We, as holistically-minded practitioners, can play a vital role in helping these families bring together their own integrative “dream teams.”
When working with families, I begin by gathering medical information from all the other healthcare professionals consulting on the child’s case. I then meet with the family to determine why they’ve asked me to be part of their team. Some initially come to see me as the “homeopath.” For others, I’m the “nutritionist.” Still others believe I will provide their “cure.” No matter their initial thought, I first set out to explain what my roles are in their child’s health and their family dynamics.
As an ND and mother to a child with a hypoplastic heart, my role is multi-factorial, but my primary objective is to be a source of support for any issue the family is unsure how to handle, and to find them the proper referrals when necessary. No one practitioner knows everything about these children; we all bring something to the table.
Now, this might sound a little like “soft medicine”, but if you’ve ever had the unfortunate experience of having a family member undergo life-threatening medical interventions; stayed at a hospital for days, weeks, and in some cases, months; dealt with multiple bouts of unfavorable news; slept for just minutes at a time, night after night, then you’ll know how precious a strong, knowledgeable support system can be.
Being able to help families find appropriate medical resources or practitioners is an invaluable support. Where should they go for physical therapy? Whom should they consult for help with the financial issues related to their hospital encounters? Which neurologist will work with an integrative team? Where can they find a pulmonologist accepting of vitamin C and fish oils as part of the therapeutic plan?
All of these and a plethora of other issues confront families as they deal with chronic medical issues. They’re stressed, often exhausted, and do not have the time to search out the answers. We can give our patients a great service by doing that research for them, and helping them coordinate these referrals.
Optimizing Health: It’s such a joy to help families and their children reach their highest health potential. Some children may live only months. Others will live a long and healthy lifespan. In either situation, we can apply our best medical knowledge to help each of these children fulfill the highest potential of the life he or she does have.
Under the heading of “Optimizing Health” is the colossal subject of nutrition. Each child, depending on his/her condition, needs a different nutritional profile, but the general goal is to ensure they receive adequate calories and proper levels of vitamins, minerals, essential fatty acids and phytochemicals.
It is very important to identify and remove food sensitivities or triggers. These kids are facing challenges enough from their heart conditions; they certainly do not need the additional burdens of chronic inflammation, digestive dysfunction, neurobehavioral symptoms and other fallout from food sensitivities.
Some medications and some disease states lead to malnutrition or depletion of certain nutrients. When working with these families, I try to keep this in mind, and design nutritional protocols that compensate for the specific depletions.
For example, as we all know, Lasix (furosemide) depletes potassium, and therefore is given with potassium or an additional potassium-sparing diuretic. However, this drug also depletes other vitamins and minerals including calcium, magnesium, zinc, sodium, and vitamins B1, B6 and C. In most cases a high potency multi-vitamin with at least 100% of RDA of each of these nutrients is sufficient to keep these depletions from becoming a concern. In other cases, a separate supplement should be added to offset specific depletions (For more on nutrient depletions, read our three-part series on Drug Induced Nutrient Depletions).
Nutritional supplementation, botanical and homeopathic remedies as well as various physical modalities such as acupuncture, craniosacral therapy and visceral manipulation can all play a role in improving the health and outcome of these children.
And let’s not forget about exercise! Individualized movement programs, as well as programs for managing stress, and improving sleep can all have major positive effects.
Pre- and Post-Op Care Protocols: Intensive surgical interventions are a fact of life for most children with serious congenital heart anomalies. I work with families to provide pre- and post-op care protocols. From homeopathic arnica, comfrey and Traumeel for improved healing times, to Vitamin C and Gotu Kola for collagen and soft tissue support, there are many well-documented therapies that will help these children heal quickly, properly, and with less pain.
Acute and Chronic Health Care: Along with the specific health challenges that come along with a congenital heart condition, these children will occasionally run into the same “everyday” health issues that affect most other kids: simple stuff like otitis media, congestion, bronchitis, as well as more complex conditions like acquired autoimmune diseases, asthma, ADD/ADHD, allergies, psoriasis, eczema or gastrointestinal distress.
Our role here is to seek out root causes and remedy any imbalances. We may need to strengthen a child’s immune system, or balance a skewed T1 /T2 ratio, reduce inflammation, resolve a nutritional deficiency, remove a food sensitivity, eliminate dysbiosis. By delving into the underlying pathology, we can resolve or greatly improve many of these problems.
My Family’s Story
This is how we applied the integrative model I’ve outlined above to my Nadia’s health care.
The story begins with the incredible team at CHOC who took a two-day-old child with liver, spleen and kidney failure through two open-heart surgeries before the age of four months.
Today, Nadia is seven years old. She has no physical or intellectual limitations. She completed the three-stage surgical process at the age of five and since then there has been no stopping her! She is one of the fastest runners in her class and her palms are calloused from obsessive monkey bar and playground activities. Nadia’s favorite subject is math and she has been at the head of her grade in virtually all areas since Kindergarten.
The second part of her story is the ongoing integrative medical component. Our team consists of a craniosacral/visceral manipulation therapist, homeopath, cardiologist, pediatrician and naturopath. We have successfully used homeopathic remedies to work through her hyperactivity and impulsiveness. Craniosacral therapy and visceral manipulation have helped to reduce the pain she experienced from the stretching of scar tissue in her sternum as she has gone through her growth spurts.
Nutritionally we have identified various food triggers that set her hyperactivity and impulsiveness back into full swing. Predominately they are sugar, dairy and gluten. It’s the combinations of these foods that can really push her limits: the pizza and ice-cream one-two punch is a prime example.
Nadia knows when she needs more fiber and will specifically ask for fruits and vegetables, “so my poo comes out better.” If she is feeling “weak” which we have identified as potentially coming from low blood sugar or dehydration (combination of diuretic and physical activity) she knows to immediately drink water or electrolyte replacement fluid and grab something to eat.
When she feels a twinge in her ear, she asks for her garlic-mullein ear drops. A sore throat warrants Echinacea glycerol and she keeps a watchful eye on ensuring she has a source of protein at each meal and snack.
In terms of nutritional supplementation, we work closely with her cardiologist to ensure there are no drug/herb interactions, and we carefully weigh potential risks before making adjustments to supplements. We never work in a vacuum and always consult other members of the team before making major changes.
Currently Nadia takes an ACE inhibitor, diuretic, potassium and half a baby aspirin daily, all prescriptions from her cardiologist. We have added in CoQ10, Hawthorne, Omega-3 fatty acids, vitamin D3 during the fall/winter season, and a full-spectrum, high-potency multi-vitamin⎯ prescriptions from her mom, the ND!
As the mother of a child with a congenital heart condition and a practicing ND, I have the unique perspective of being on both sides of the practitioner-family relationship. I know, first-hand, the value of an integrative team for the long-term care of children with congenital heart conditions. Wider implementation of integrative teams for these children will have dramatic and positive implications on their longevity, vitality and quality of life.
Bianca Garilli, ND is a former US Marine who is now a Naturopathic Doctor. She has been on staff at the University of CA, Irvine as volunteer clinical faculty and as a practitioner at the Susan Samueli Center for Integrative Medicine. She consults with Metagenics on various ND related issues; and writes and lectures on the topics of natural and integrative medicine. Dr. Garilli lives and practices in California specializing in the treatment of obesity and lifestyle related chronic diseases in addition to seeing children with autism, ADHD/ADD and congenital heart conditions. Reach Dr. Garilli via email: firstname.lastname@example.org