I first got involved with Aboutface shortly after my oldest son Kyle was born with a bilateral cleft lip and palate. After finding out the diagnosis through an ultrasound, they sent me to meet the craniofacial team at the Janeway Children's Hospital in St.Johns. Suzanne Dyke, the head nurse there gave me some information on AboutFace, but being so overwhelmed with everything that was going on, I just put it away when I got home and forgot about it.
After Kyle was born I had so many emotions running through me. I felt fear and anger, but the one that stood out from the rest was the feeling of being alone. Even though I had a huge circle of family and friends there to support me and a great health care team, I didn't feel comfortable talking to anyone about my feelings, thoughts, or concerns. I felt like my family and friends didn't understand because they all had perfectly "normal" babies. I wanted to talk to someone who felt the same as me. Someone who knew what I was going through. That was when I finally dug out the information on AboutFace and contacted them. I swore I would do everything possible to prevent other parents from feeling totally alone like I did.
In the beginning, AboutFace was there to answer questions and concerns over the phone, and via email, however there was no rep in my community, so it was hard to get the one on one support I needed from someone who was going through the same thing I was. I kept thinking if AboutFace is helping me so much over long distance communication, how much more could they help people if they actually had a representative here?
I began to volunteer my time with AboutFace, and soon decided to start hosting a playgroup for families that had children with facial differences. After my experience of feeling overwhelmed and alone with no support, I wanted to do everything possible to prevent that in future parents of babies with facial differences. To accomplish this, I knew I had to bring as many programs / services offered by AboutFace to Newfoundland and Labrador.
The playgroups are held on a monthly basis, and usually take place on the last Saturday of the month from 10:00 -11:30am at a government funded Family Resource Centre. Parents love the peer support they get at the playgroups. Being able to talk to other parents about their experiences and struggles makes them realize they are not alone in what they are experiencing. AboutFace provides informal education sessions during the peer talks, and also provides light snacks and beverages. We also ask parents to bring a small healthy snack to share. Right now I have a small group of a few families per session, however numbers are growing each time.
Because I want to help AboutFace any way I can, I also volunteer at Camp Trailblazers Newfoundland every year. I love interacting with these teens and getting to know them. Watching how effective camp is for building their self esteem and watching them grow over the years is amazing. I also host an annual community/family picnic for AboutFace in St. John's. It is another opportunity for families to get together and have fun. We have hot dogs, hamburgers, cake, loop bags, prizes, and many entertainers. It's a full day of fun and we usually have a big turnout.
I love volunteering for AboutFace – I feel it is important for me as a parent of a child with a facial difference, as well as a member of the community to keep as many of their programs and services here in Newfoundland. I also feel that sharing my experiences with new moms and providing them with the information, education and resources that I have acquired since Kyle was born is incredibly helpful to them when they are going through a hard time. I want to make sure that programs like Camp Trailblazers can continue to be offered in my province. Having been several times, I want to make sure it is something that is available for him when he is old enough to go. If not for AboutFace, the parents in my groups wouldn’t have anywhere to get answers to any of their concerns or questions. And it is like a security blanket for me – l know that whatever situations I find myself in with Kyle, support from AboutFace is just a phone call or email away.
Lisa has been a dedicated AboutFace volunteer for years. Thank you for your service Lisa! Her next hosted playgroup is on April 12th, so if you are in the St. Johns, NL area and would like to join, CLICK HERE for more information!
Tyler was born early, at 35 weeks, in October 2010. My water broke spontaneously in the middle of the night. We weren't expecting the arrival of our first baby so soon and were definitely not ready for his condition when he was born. When I delivered Tyler, the doctors noticed he was swollen on one side of his face and had some excess skin under his chin. He was taken to the nursery since he had trouble with his breathing and was put in an incubator. The doctors didn't know what was wrong with Tyler and decided to wait a day to see if the swelling was due to the delivery. I remember not wanting to see Tyler because I was so afraid to get attached to him in case he wasn’t going to pull through. I was also scared of what he would look like since I had only been able to catch a glimpse of him after his birth.
After a few days and still no progress with the swelling they then realized that we were dealing with a more permanent condition. To further diagnose his problem, Tyler was in need of an ultrasound/MRI. The doctors had a pretty good idea of what his diagnosis could be but the ultrasound technicians did not feel confident enough to make a proper diagnosis following the results. Tyler was then flown to the IWK in Halifax where they had specialists able to diagnose the problem.
As the days passed, it was hard. We were dealing with the early arrival of our baby boy plus the surprise of a health condition. It was an emotional roller coaster. As a new mother, I had feelings that I didn't know I could have. They ranged from anger to fear, sadness to spite, happiness to guilt and everything in between. Not knowing what is wrong with your baby is the scariest place to be.
Once we got the diagnosis, things started to calm down and it’s like we began to breathe. Tyler was diagnosed with Cervical Lymphangioma, a rare congenital veno-lymphatic malformation that causes benign cysts-like formations. Tyler’s condition affects the right side of his face, more so in the neck and cheek area. Tyler has both microcystic and macrocystic cysts, an even rarer type of lymphangioma. This type is harder to treat due to the facts that the microscopic cysts are harder to drain. Tyler was also born with a separate condition that caused breathing and eating issues. The team of doctors at the IWK were spectacular and they made sure we understood the conditions and everything that came with it.
After 3 weeks in various hospitals, we were able to bring Tyler home. That's when reality set in, you begin to ask yourself questions of how will you react when people look at him and notice he is different? How will you answer? Will you be able to accept that he is different? Will he be teased at school? Will you be able to protect him? The uncertainties and questioning went on and on. We decided we were going to be honest about his diagnosis and explain that he may look different but it's not a life threatening condition. Tyler has such a great personality that now people hardly notice his facial difference.
I am glad I was made aware of AboutFace from a social worker at a hospital, and happy to have found such a great organization. The information provided was helpful and made us feel less alone in the journey we were living.
At 3 months old, Tyler had an operation (sclerotherapy) to drain some of the cysts. The procedure was a success and shrunk most of the cysts located under his chin. Now, 16 months, Tyler is thriving everyday!! We cannot wait for what is to come and now fully love and accept Tyler as he is. We are ready to conquer anything and know Tyler can as well!
"I am a mom of a cleft child. Before I started on this journey, I didn’t realize how blessed I would be. Pregnancy was a breeze for me. I was hardly ever sick or craving weird foods. I loved it. When I got my ultrasound done during pregnancy, our precious baby was hiding quite well and it was extremely difficult to get any face picture at all. There were no red flags that came up on ultrasound. I was feeling good and baby was feeling good too.
Kaeden was born 3 and a half weeks early and when he came into the world. He lay on my chest and I was overwhelmed with emotions. I hadn’t seen his face yet, and soon the doctor took him away and asked the nurse, “Did we know about this?”. I tried to stay calm and not worry. They quickly explained that our sweet baby boy was born with an incomplete unilateral cleft lip. The next 24 hours, I mourned the loss of what I thought was the “perfect baby”. It was day two at the hospital when I was holding Kaeden and he looked into my eyes; immediately, all my worries and my fears, washed away. He WAS perfect. He IS perfect. According to the experts and lactation consultants, we should have been able to get breastfeeding to work and we should have been able to use a normal bottle for him. We spent many hours trying different things with tears, frustration and no luck. It took a good 3 months of switching from bottle to bottle and attempting breastfeeding to find something that worked.
November 2nd we headed to the hospital early in the morning for Kaeden’s surgery. He was being such a good boy. I’m so glad he was so sleepy because it had been so long since he had eaten. He was sleeping right up until we handed him off for surgery. We got to the recovery room and in a raspy, weak little voice, our baby was crying like never before. It was heartbreaking trying to calm our swollen and bruised baby boy after recovery. It was frustrating trying to get him to eat in a new way he wasn’t used to and trying to get him to sleep in hospital full of noise. I felt like we were force feeding him as he was learning to eat by syringe. The first couple days he would just cry as we tried to feed him. But, it didn’t take long at all and he recovered so fast. He was smiling and talking the morning after the surgery. By a week and a half he was back to his old self, but with a new smile. When you think of it, the time these cleft children spend in surgery and recovery is so minuscule in comparison to the grand scheme of things. As trying as it was going through the struggles of feeding and surgery, I would do it all over again, because I love him so much. I don’t remember the trials that well, it’s the rewards of the journey that sticks with me. As I think back now, I’m glad Kaeden’s cleft was a surprise. This way, I didn’t have much time to mourn that “perfect baby”. I was simply thrust into the joy of the parenting journey. I went from mourning the loss of the “perfect baby” to mourning the loss of his beautiful cleft that I loved to kiss. His face has changed, but he has stayed the same happy, friendly, adorable, loveable, cuddly baby that loves to make people smile and whom I love to love. Now, you would never know he was born with a cleft lip. At 17 months, he is actively getting into things, practicing his talking and learning new things everyday.
After Kaeden was born, I had searched online for support and found an online cleft discussion board. After being there for a while, joining the cleft community, supporting others and reading many other amazing cleft journey stories, I realized that there were a lot more stories out there that needed to be shared."
-Julie, mom of Kaeden
Facing It Together (FIT) is a program helping to encourage, empower and educate new parents with babies born with facial differences. It is a workbook and DVD combo resource that is distributed in hospitals all across Canada. This wonderful resource is now avaliable in Spanish as well!
There is a lot above and beyond the day to day challenges of having a 'normal' baby when you have a child with a facial difference. There is an additional set of medical appointments, dealing with staring and rude comments, going out in public for the first time, perhaps guilt if one parent was a gene carrier that was responsible for passing on a certain condition to their new baby. There's a lot. FIT is a resource avaliable to new parents of children with facial differences to help them cope with all those 'firsts' and equip them with the knowledge and expose them to parents who have been where they are now and hear that it'll be okay.
New parents of children born with facial differences will learn the following in FIT:
Please support this project to encourage the distribution of this resource in Spanish!
Imagine what it's like to find out that you're expecting a brand new baby to enter your life shortly. Imagine planning for months and months certain you'll be prepared and know what to expect.
Now read Emily's "Welcome to Holland" poem to gain some insight as to what life as a parent of a child with a difference is like.
"Welcome to Holland" 1987 by Emily Perl Kingsley
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
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