Who we are

MISSION

The Children’s Organ Transplant Society is dedicated to enhancing the lives of children in British Columbia who have had a transplant, those who are waiting for a transplant, as well as their families, through support services, advocacy and awareness.

HISTORY

In April 2001, Debbie Bielech founded the Children’s Organ Transplant Society – one year after donating the left lobe of her liver to save her son’s life. She experienced many of the challenges that all families confront when given the news that their child needs a life saving organ transplant. Her experience with her son motivated her to create an emotional and social support group for families who were waiting for organ transplants, for transplant recipients and their families. In addition, she wanted to provide encouragement and support for family members who could potentially become donors.

Throughout the years COTS has grown to provide ongoing peer support holding one or two family events per year, sending kids to camp and offering educational events. We also work with BC Transplant to increase awareness of the importance of organ donation.

Through the vision and efforts of the Children’s Organ Transplant Society and BC Children’s Hospital staff, the provincial government increased funding for the Multi Organ Transplant Clinic at BC Children’s Hospital. And now because of their joint efforts, there is a full team (social worker, psychologist, nutritionist and nurse) supporting children and their families in the Multi Organ Transplant Clinic. COTS and BC Children’s Hospital continues to advocate for additional services in order to expand the existing programs to be able to be better serve the transplant families in BC.

EDUCATION AND AWARENESS

For most children and their families, transplant issues and challenges will be something they have never experienced before. That’s why we provide educational support to assist with medical care and emotional needs. This includes:

  • Family events
  • Parents’ Education Day
  • Sibling Education Day
  • Peer support
  • Website
  • Blog
  • Social media

In addition, we seek to promote the awareness of life-saving organ donation, and collaborate with organizations that include: BC Transplant and the Canadian Transplant Association.

ADVOCACY

We work closely with BC Children’s Hospital, pharmaceutical companies, and other like-minded charities and organizations that work to support families going through the life-long transplant journey.

What we do

We provide many support services, including: medical supplies, education, and peer support for families of transplant children.

MEDICAL SUPPLIES

For many families, the cost of medications and medical supplies—totalling thousands of dollars annually—can be prohibitively expensive. In these case, there are no other sources for coverage, and include such things as:

  • Prescription medications, including vitamins and minerals.
  • Nutritional formula
  • Tube feeding supplies
  • Catheters and supplies

The implication on the health of these children if they do not receive these medically necessary medications and supplies is significant:

  • Poor weight gain, malnutrition, growth and developmental delay
  • Dehydration and injury to transplanted organ
  • Increased medical complications and admission to hospital
  • Increased risk of infection and premature
NON-MEDICAL SUPPLIES

There are several areas of support where on a case by case basis, we may be able to support families.

  • Counselling expenses
  • Educational scholarships for transplant youth
  • Funeral Expenses
TRANSPLANT CAMP

Each summer, we send children and youth to a specialized transplant camp. This provides an opportunity for young people, who might not otherwise be able go to camp. They get to enjoy outdoor activities with other children who have experienced similar medical issues.

PEER SUPPORT

Through COTS you can be connected with a family that understands your experience because they have had the same experience. Having the opportunity to talk to someone who really ‘gets it’ and can relate to your concerns, joys, triumphs and frustrations helps you know you are not alone.

Throughout the year, COTS hosts social events for families to connect with each other. To find out about other social events for families go to Events.

Each year, COTS sends children to a specialized a camp for transplant children and youth. It offers a wonderful opportunity for children who might not otherwise be able go to camp. Click here if you would like to support a child to go to Camp Latona.

TEEN SUPPORT

Being a teen who has had a organ transplant can have its own unique challenges.

Dating, friendships, sexuality, health, physical and emotional development all take centre stage in the life of a teenager. Sometimes, in an effort to express greater independence, teens may make choices or adopt attitudes that may be challenging for parents. This is something that many parents of teens experience but for a young person who has had a organ transplant, some of the normal explorations of adolescence may have serious health consequences for their physical health. Teens may also experience some emotional distress as they think about their future and what that may mean because they’ve had an organ transplant.

SIBLING SUPPORT

COTS held its 1st Sibling Day Support Conference in September 2012. This conference was for siblings and parents of children who have had organ transplants and was coordinated with BC Children’s Hospital Multi-Organ Transplant Team and Maru Barrera Psychologist from Toronto Sick Kids Hospital.

The Transplant Experience

PARENTS

As many transplants are done out of province, one or both parents will need to take time off work. It is not unusual to have unexpected medical expenses. In addition, a parent who is a living donor will especially need to ensure support is in place for the other parent and the rest of the family as they are also recovering from their medical procedure.

PARENT TO PARENT CONFERENCE TIPS AND STRATEGIES
  1. Tips on self-care and stress management:
    • Exercise daily, even if it’s a 15 minute walk
    • Eating well, even if you don’t feel like it
    • Do something for yourself
    • Seeking out professionals and/or friends to talk about my child’s diagnosis
    • Going to work gives me a different focus
    • Go away on a vacation without the children
    • Asking for help from family and friends
    • Remembering to play and have fun with your children
    • Celebrating the small successes
    • Keeping line of communication open with your partner/spouse
    • Sharing care responsibilities with your partner/spouse
    • Keep on hoping
  2. Strategies for communicating with your child’s health care team:
    • Don’t be afraid to call members of your child’s team when you have concerns
  3. Strategies for advocating for your child:
    • Outlining an emergency plan with your child’s school, daycare, etc.
    • Request a letter from your physician/nurse for an emergency plan to provide to school
    • Educating others about your child’s condition
SIBLINGS

Having a sibling who has had an organ transplant can impact the other children in your family. Because parents need to focus on the child who has had the transplant they may not be able to fully attend to the needs of their other children. Siblings may be worried about the health of their brother or sister, they may miss parental attention and changes in the child’s behaviour may become noticeable. It’s important for parents to reach out into the community or hospital team for help, ideas and support.

ENCOURAGING YOUR CHILD

Communicate with your child about the lifelong importance of taking their medications, learning to take care of themselves, listening to what their bodies are telling them and becoming their own medical advocate as they get older. Encourage your children to communicate with you about how they are feeling, asking for help when needed and asking questions about medical issues they may not understand.

RE-ENETRING SCHOOL

Each child’s needs after a transplant is unique and as such, it is very important for parents to support their child’s school in preparing a healthy and safe environment for your child. Work with your medical team, your child’s teacher, the school and public health nurse to create a back to school ongoing health care plan. You may wish to include your child in developing this plan to find out what s/he feels is important. It can be helpful to set up an ongoing school contact that the child feels comfortable going to if they are not feeling well or if they need medical assistance.

If you have questions please contact COTS.

Check out our Sibling Day presentation by Dr. Maru Barrera

Stories and poems
Madeline's Story

by Shani Sam.

A chance meeting with Debbie Bielech, founder of the Children’s Organ Transplant Society of B.C., helped us survive the difficult transplant journey with our daughter.

We met Debbie after a stressful weekend in and out of BC Children’s Hospital. Our daughter Madeline was born with what is thought to be a variant of biliary atresia. She was not diagnosed with liver disease until she was 10 weeks old. Her disease progressed quickly and by the time Debbie spotted us in between appointments; it was more than obvious to her that our baby was very ill.

Debbie quickly introduced herself and spoke of her own story of donating a portion of her liver to her son Matty. She was warm and friendly and understood immediately how we were feeling. Debbie told us that she had founded the Children’s Organ Transplant Society of BC after recognizing there was a lack of support for parents and children who are waiting or recovering from organ transplants. We exchanged phone numbers and felt more positive going to our appointment to see the transplant nurse at BC Children’s Hospital.

Soon after we met, Debbie phoned and invited us to her Society’s annual summer picnic. Apprehensively, we agreed to attend. We were nervous about our daughter’s pending liver transplant assessment in Edmonton, but we knew that it would be a privilege to speak to parents who have traveled the same road. Going to that picnic was the best thing we did to prepare ourselves for the long journey ahead.

Most importantly, we could see that these wonderful families had a sense of normalcy in their lives and that gave us hope for the future. We often thought of the children and the families at this picnic during the darkest days of our daughter’s illness.

Madeline was fortunate to receive a new liver last November, and has had a relatively uncomplicated recovery. We were able to attend the Children’s Organ Transplant Society Picnic again this summer and it was wonderful to reconnect with some familiar faces as well as meet new friends. It is an honour to be a part of this caring group of strong, courageous and giving parents and children.

We hope that the Children’s Organ Transplant Society continues to grow and reach out to families across BC. We encourage families who are going through or have survived the organ transplant journey with their child to become involved with the Society. We also hope to be able to give back and help families the way the Children’s Organ Transplant Society has helped us survive our roller coast ride of a journey.

Matt's Mom's Tribute Poem

All my children are gifts,
But you are the one,
Who has taught me more about life,
Than any other.

You have fought for your life from your first day,
You are my hero, my friend and my son.

I remember the surgeries, IV’s and infections,
But most of all I remember your smiles and spirit,
I know it was hard to keep fighting for your life,
Some days in the past,
And now I feel sad that I wondered if it was all for the best.

Even though most medical staff had given up hope,
You have taught them more lessons about fighting for life than most,
You are a “miracle” they now say,
And quietly thank us for showing them the way.

Every time we see a doctor,
And your little hand holds mine so tight,
I see the look in your eyes “Is this OK mom”,
Will you protect my life?

Challaine's Story

Challaine was diagnosed prenatally that she had no functioning kidneys. She was born 3 weeks early and immediately started peritoneal dialysis which only worked until she was 20 months old. She was then immediately switched to 6 months of hemodialysis. Numerous medical situations arose from her kidneys not functioning. Altogether Challaine has spent close to over half her life at BC Children’s Hospital and Bella Coola Hospital away from home. Dialysis is tough for anyone especially one trying to grow.

Shortly after hemodialysis started we had to decide which parent would be tested first for living donor transplant matching possibility as they would only test one parent at a time. As well they hoped Challaine was finally big enough to receive an adult kidney. So Darren, Challaine’s hero – her Daddy, went first & matched! When Challaine was 26 months old, they both underwent major surgeries to successfully give Challaine her first go at life ‘dialysis free.’ a successful living Kidney Transplant. Amazing doctors/specialists/nurses/support team & prayers at BC Children’s hospital made this miracle called transplant happen. We love them forever for helping our daughter live life as close to normal as one could hope. It has absolutely changed her world.

It is also a blessing the COTS program “COTS On the Go” is doing for families such as ours. We travel from up north, Bella Coola, BC to Vancouver very often but it is usually just to cram many medical appointments into our stay. COTS has helped our family to enjoy a event to the Vancouver Aquarium with our daughter Challaine (now 3 and a half years old) on one of these trips. A very nice treat especially since our family lives on a very tight budget. We thank you from the bottom of our hearts for your work & kindness.

Many blessings back to this great program & staff but especially to those who donate towards COTS.

With warm hearts,

From our family
Challaine, Robbie, Rhonda & Darren

We would love to hear how your son or daughter is doing!

Please send us a story and we will feature it on our website.