Friday, March 4, 2011

Welcome to the club

I'm delighted to share this guest blog from Marcy White (above right). Marcy recently joined our family leadership program at Holland Bloorview. This program sees parents advise on hospital policies and programs, mentor other families and share their health-care story and insights in education forums with staff and students. If you are a Holland Bloorview parent interested in this program, please let me know. Thank you Marcy!

Welcome to the club
By Marcy White

I belong to a receptive and supportive club which I joined unknowingly. At various times, our members are experts and novices, advisers and information seekers. My alleged area of expertise has nothing to do with my university education or employment history, and everything to do with raising my son, Jacob (above centre).

I am a reluctant expert on gastrostomy feeding tubes, also known as g-tubes, and all their accoutrements. G-tubes are surgically implanted holes in people's abdomens where tubes are inserted so that liquid nutrition and medication can be fed directly into the patients' stomachs, bypassing their mouths. I'm not proud of being so well informed about this particular topic but I amassed this information because I had no choice. My son, Jacob, has had a g-tube since shortly after his birth, almost nine years ago.

Recently, I found myself speaking with a scared and overwhelmed mom whose child was abruptly shoved into the world of 'alternative' feeding. During our conversation I remembered the feeling of relief I experienced the first time I was introduced to a member of what I have termed the Parents of Children with Medical Issues Club (PCMIC). And I recalled how comforted I felt to know I wasn’t alone. If I was able to provide some insight and information to this mom whose world was only recently turned upside down, I welcomed the opportunity.

When Jacob was born, he had difficulty breathing. At just a few minutes old, he was placed on a ventilator and started down a very long road of medical battles for his life.

When I went into the neonatal intensive care unit to feed him on his second morning, I was surprised to see my tiny son with yet another tube running out of his little body. This one was a two foot long naso-gastric (NG) tube coming out of his nose, taped in place to his soft cheek with a white bandage that covered almost the entire right side of his face. The nurse, noticing my appalled reaction, explained that this tube would function to deliver my pumped breast milk directly into his stomach because he couldn't swallow without choking. In shock from the unexpected complications following Jacob's birth, I watched as the milk slid into his body, drip by drip.

When Jacob was six weeks old and still in the hospital, the doctors approached us about having a hole surgically cut into his stomach so that a tube could directly administer his nutrition, a more permanent solution than the NG tube.

When I saw Jacob post-surgery I barely recognized my little guy. Since his second day of life, he had a giant white gauze-like bandage covering half his face. Walking over to his crib, I saw an adorable little baby with a full head of dark brown hair and pudgy cheeks. Two of them. Seeing all of him was the first positive thing about this surgery. I could kiss both sides of his face and feel his warm cheeks.

I learned how to care for my son. I received intense, on-the-job medical training from the nurses during Jake's three-month hospital stay. My education was from trained professionals. But I felt isolated – I didn't know anyone who had a child like mine, one who struggled each day to breathe, to move, to grow. I was alone.

Three years later, Jacob's medical issues had stabilized and taking care of his needs had long become routine. Through mutual friends, I was given a phone number of a parent with a child a few years older than Jacob who had similar medical challenges. With the hope of gaining some insight from a more experienced parent, I called Jeff.

One evening a few days later, Jeff and I were sitting in my kitchen discussing our common experiences and struggles as my husband, Andrew, mixed Jake's meals for the following 24 hours – six containers of infant formula, each one with a different ratio of powdered formula to sterile water. When Jeff noticed how time consuming and labor-intensive Jacob's meal-preparation was, he explained what his son ate and how much easier the process could be. Jeff shared pertinent information with us that nobody else had. The medical professionals didn't hold back these details on purpose, they just didn't know them.

I've learned that the best source of information is other parents who are in similar situations. My initial contact with Jeff didn't happen until Jacob was three years old and we had been struggling on our own for his entire life. I now know how helpful it is to seek out parents who have been through what I'm experiencing. The hardest part is finding the first person. After that, it gets easier. The PCMIC is a group that anyone with a child with challenges can join and benefit from the extensive and assorted experiences of others who are willing to share.

When I was given the opportunity to be the first experienced parent to speak to the mom new to my world, I welcomed the chance. I wanted to be able to do for her what Jeff did for me. I wanted to show her how supportive our club is.


Marcy I related to so many aspects of this post. So glad you are a family leader at bloorview and can share information and connect other parents.
I agree that the best source of information is other parents in similar situations but I also think medical professionals should be aware of the parental tricks of the trade or at least know how to connect parents.
Louise I think you had discussed ways to share information with Jonathan and Janis. This website and theirs have been tremendous sources of information and support for me.
thanks everyone for doing this great work!
Lisa are just amazing!!!!

Dear Marcy,

When I had the pleasure of reading your first piece, 'A dentist with a different approach', I thought to myself, "Now, this is a mom who won't only land on her feet, but will better the life of her beautiful boy."

Upon reading your second piece for BLOOM, I find myself thinking, "You're someone whom I would be blessed to meet someday, as we both love giving back all that we have been given and are at our best when others are in need."

May you always listen to your heart and allow your mind to show you the way. For, you and your son, Jacob, are a light which cannot be extinguished.

Humbly yours,

Matt kamaratakis

I could feel the wave of relief and understanding you experienced with Jeff in the kitchen!

As Lisa and Matt suggest, we really do NEED each other.

Thank you for sharing Marcy! Louise

I have been internet browsing looking into info on my special needs daughter and came across this article. I don't know anything about Bloom or Holland Bloorview or PCMIC. My daughter is 3 1/2 and has mild CP, hypotonia, hypoplastic thumbs and has been NPO with a G-tube since 14 months old. She is high-functioning but has severe oral motor and speech delays. I don't know how to find out more about support programs or others living the crazy life of a parent with a child with medical needs, but would love any guidance you can provide! Thank you!