Behind the scenes ~ I came across SerenaRae in a facebook group for parents of children with Goldenhar Syndrome and I was really struck by her positive and proactive attitude and views on parenting. I’m so glad she agreed to be interviewed for this website. I’ll leave the rest to her…
My Story ~ An interview with SerenaRae Stein
Thanks very much for agreeing to be interviewed for the website. Can you start by letting the readers know your name, age and where you’re based?
My name is SerenaRae Stein, I’m in the Edmonton area of Alberta, Canada and I’m 43
Thanks. Everyone interviewed on the site has some connection with facial disfigurement / visible differences. Can I first ask which term you tend to use and what connection you have?
My daughter was diagnosed with Goldenhar about 2 months after she was born. It is a relatively mild case.
Ok, how old is your daughter now and for anyone who doesn’t know what Goldenhar syndrome is, in what ways has she been affected?
She will be 13 this fall (2018). For Emma, the left side of her face is smaller and she was born with a small clef in the side of her lip as well as skin tags. The left ear is also a tad smaller and a different shape. Her right eye has a dermoid cyst on it. At age one her clef was repaired and the skin tags removed. The cyst on her eye is purely cosmetic so it was not removed however she is significantly nearsighted. It is unknown if this is directly linked to Goldenhar or not. Her left ear also has some hearing challenges. Her ENT has come up with a fabulous solution to give her almost full hearing, but she is extremely sensitive to sound, especially high pitched sounds. She does not like going in big box stores like Costco or Home Depot because she can hear the lights humming for example. She also has a very high palate. Our ENT suggested seeing an orthodontist early on for a palate spacer. It did wonders for her. She had her tonsils and adenoids removed at age 3 as she had developed sleep apnea. The apnea was not caused by large tonsils and adenoids, but by the very narrow passages.
And did you know about her syndrome before she was born? I had no idea with my son so I am always interested to know if other Mums knew and how they felt about it at the point of finding out
We had no clue. Since her case is mild it was never caught on the ultrasound. I had an enjoyable pregnancy in fact, and a bit of a crazy delivery. We noticed as soon as she was born, but her Apgar was 8, 10, 10 so it didn’t sound too much alarm. It was the skin tags that were noticed first. I gave birth in Fort Saskatchewan, a small city outside of Edmonton. No one was sure what it was. We were given a day pass to take her into Edmonton to see a paediatrician. His name is Dr. Ortega, recently retired but I will never forget that appointment. He carefully checked her over, listened intently to her heart and belly. Told us that he was not sure what all the little external things were but that she was healthy and her heart, lungs and belly sounded good. He said take her home and I will make sure you get answers. Two months later we had the diagnosis by a geneticist and after that numerous appointments to check her eyes, spine, hearing and kidneys. We met her plastic surgeon and her ophthalmologist. At 4.5 months we had answers to many questions and a plan of action. The ENT came later when the apnea developed. We are extremely blessed to have the Stollery Children’s Hospital in Edmonton where all these doctors are based.
The geneticist told us the suspected cause was an interruption to the blood flow around 8-12 weeks gestation. That is was unknown what causes the interruption. I beat myself up pretty good over that. Wondering if I had done something to cause that to happen.
Yes, I felt the same. How did you work through that guilt?
I’m not sure I’m fully over the guilt. Getting past it was probably wrapped up in getting over what I call my death complex. I recognize now, that for many years I struggled with mental health in that I obsessed over what would happen if someone I loved died. It was very wrapped up in the passing of my dad when I was 17, followed by my best friend 4 years later. I constantly worried about my mom getting ill. I went away for university and it snowballed. I was able to tell you at any point if my mom was ill or had suddenly passed how long until the next bus departed to get home, how many shifts I would need to trade, which professors I would need to talk to etc. I woke up every morning and had a mental plan in place. My mom was very healthy by the way! When my husband and I got serious, he slowly got added into this. Then my mom met a great man who she married and he got added. After we finished university my husband was working in corrections and that upped the ante on my worry. He started working as an on call firefighter the summer I was pregnant and then it skyrocketed. All this time, NO ONE knew about my obsession. I had completed two degrees and taught for 5 years with this. It really is a testament to how people can hide mental health. Having a baby born with various concerns absolutely pushed me to the edge and I finally told my husband what I had been doing. He told me point blank I had to figure out how to overcome that. I spent a lot of time reflecting and working through things in my head while holding this beautiful baby. Worked through the guilt too. Those thoughts are still there but I do not allow them to be my forefront thought any more. Really working through it was also part of leaning to be “Fire Wife Strong” at the same time.
WOW! What a lot to be going on for your as well as adjusting to a new baby! How did you cope in those early months?
My peace came from prayerful times with God and coincided with the fact that colleagues of mine had a daughter who was battling cancer. She was in the hospital that I took Emma to. Every time we had an appointment I would bring them their favourite coffee and a little something for their daughter to do. She was 5 and literally slipping away before their eyes. It put things into perspective for me. I’m an optimist for the most part. So, I always tried to see the positive. I had a healthy, happy baby with some concerns. They were losing their daughter. She passed away when Emma was 6 months old.
And did your daughters syndrome affect how you felt about introducing her to family and friends at all?
Not for a moment. We didn’t announce the diagnosis or anything. If people noticed and asked we answered. My husband doesn’t like labels, so he never refers to it as Goldenhar, just that it is a couple things to work through.
In what other ways would you say that you and your husband have dealt differently with your daughters Goldenhar?
Well like I said, I’m an optimist and he’s a pessimist! I talked about it at work more in the early years for sure. I teach at a faith based school and many of my colleagues are also friends, so sharing what was going on and praying about it occurred regularly. Whereas my husband’s full time job up until 5 years ago was either with corrections or the Sheriffs. You don’t get personal when you are around inmates all day (protection for self and family) and since you doing get personal with your colleagues you don’t open up and share what’s happening in your life. Even the mundane things. So it’s hard to built work friendships in that setting. He also keeps to himself more about personal stuff. Although I’m sure he’s talked about it with his go to firefighter friend, that’s the person you dump on when you’ve had a call that is sticking with you and you know your wife can’t handle the details and be your support. I’m not good with hearing about cardiac calls (brings up stuff about my dad).
Yes I can only imagine. Not sure I’d fancy making small talk with the inmates either! Would you say that you work together (just in different ways) for her benefit?
Oh absolutely and we are a good balance. Since I can get carried away with long term planning and issues and he is more of tackling in the moment type of stuff.
Sounds like the perfect mix. And what about your daughter? At what point did she realise she looked a bit ‘different’ to her friends?
Honestly, I don’t think she realized until she was in school. Because her differences are minor, people don’t notice right away. It was more working through the vision and hearing issues that brought her differences to the forefront.
I believe she coped well, she didn’t talk about it a great deal except with her closet friend. The first I ever really heard her talk about it was at the beginning of grade 6 (age 11) when her teacher was reading Wonder out loud to the class. He read the first chapter out loud. She told me about it and that she was super worried that it would make people notice she had things going on. She didn’t like that she could relate to the story and didn’t know what was going to happen in it. So I bought her a copy of the book so she could read ahead. She felt better by going into the situation aware then having surprises. I gave her homeroom teacher a heads up about it. He had yet to notice Emma’s face but did say that when he started reading it she looked uncomfortable.
I think it bugs her more about what needs to be put into place for her to be successful with her vision and hearing. She doesn’t want to appear as needing special treatment.
She sounds independent and strong which are both brilliant qualities. Do you think having the Goldenhar has affected her self image and self esteem at all?
No, I don’t think so. I think what affected her self esteem more was her frustration with learning math! She is an advanced reader and strong writer and hated that Math didn’t come easy. I would guess she actually dislikes her leanness more. I’m always hearing about how impossible it is to find clothes that fit. Which I agree! She’s 5’3” tall, but waist size of an 8 year old! But that has nothing that do with the Goldenhar ….
OOO what I’d give to be lean!
Lol. Me too!!! She doesn’t see it that way. At least not as lean as she is. But self-image overall, I would say no. However, we are entering the teen years …. they become so critical of themselves during that time!
Very true! I know you’re passionate about your daughter being a voice in her own education. Can you tell me a bit about this?
It is important to us that as she gets older, she knows what she needs and can advocate for it. A seat close to the front (vision) with her right ear closest to where the teacher typically stands. Or knowing she can ask for an assessment to be enlarged so she can read it. She’s a bright kid so it’s easy for teachers (and I am one) to not see the challenges. She would never qualify for an IPP (Individual Program Plan) because she is not failing and is reading well above her age level. I do not want to be a helicopter mom. I want her to know what she is allowed to have for accommodations and then pursue them if needed. Granted she is now going into grade 8. This was a process we worked on gradually. In grades K-2, I had conversations purely with the teachers and not with Emma present about the vision and hearing. Grade 3 she was there. Grade 4, I had her tell her teacher about her needs with me present. Grade 5 and 6 she told them, without me there. I gave a heads up in an email and told them they could email me with clarifications and questions. Grade 7, flew solo although some of her teachers did ask me about it after Emma talked to them.
The amazing thing about doing this, is she has also encouraged friends to advocate for their well-being too. From helping one friend who needed some extra help but was too shy to ask or to taking another friend straight to the guidance counsellor when she realized that friend was harming herself. She knows resources exist and asks about them, even ones she doesn’t require but a general interest.
It sounds to me like you’re raising a wonderful young lady! What are your hopes for Emma in the future?
Thank you ?
Hopes for Emma’s future. Happiness. A place in the world where she figures out how she wants to make a difference. She loves animals and right now has her aspirations set on being a zoologist and working to save endangered species or with big cats. She is a bit of a social justice warrior in development and I think as she gets older that may come into play more, but at the end of the day I want her to be passionate about her job and pursue her interests, be healthy and happy and make a positive impact in all interactions.
Finally, what would you say to a new parent at the start of a journey like yours ?
Advice for a new parent. Breathe. You will get through this. Baby steps, don’t speculate too much down the road. Take the challenges presented to you in chunks and work towards solutions. Stay off random internet searches… it doesn’t help. Find a good support group. Either a social media one or a live group or a friend/fellow parent to spill to. Make appointment trips special. Ours was using the glass elevator in the hospital and a treat from the coffee shop. That started unintentionally when Tyanna was ill, bringing her parents a coffee and using the glass elevator to get to her floor, but it just became a part of our trips. Then my kid started commenting on looking forward to it. Years later a Cat Cafe opened near our hospital, so now that’s our treat! Finally, but very importantly. Take care of you. If you are stressed/worried/anxious you will not be the best parent you can be. Self-care is vital to your mental health and ultimately your baby’s care. Enjoy that baby! They grow up fast. Right now, your baby has no clue that they are different, they are just learning about the world around them!
Thanks so much for your time. I really appreciate it and I’m sure the readers do too 🙂