Wednesday, April 25, 2018

Family Spotlight: P.J.'s Birth Story & Advice For New Parents

By Crystal Kouri
Surprise, your baby was born with Treacher Collins Syndrome! Your delivery was not the beautiful experience that you had expected. You may have had a lot of warning signs during the pregnancy that may have been overlooked and you feel let down by your doctors. You probably labored for days in the delivery room -- probably much longer than what is considered to be normal. And then all hell broke loose. You are not alone.
Here was my experience and the raw feelings I felt  after giving birth to my beautiful baby boy, P.J, born with Treacher Collins Syndrome.
(L-R) Jono Lancaster, P.J., Paul Reynafarje, father,
and Crystal Kouri-Reynafarje, P.J.'s Mom 
Finally, after days of contractions, I was induced due to severe polyhydramnios. Four days later, P.J. finally came out. His dad and I were both crying with joy and relief. They put him up on my chest for the first time. The doctors and nurses did a double take and immediately took him back. Being our first baby, we were so confused as to why they would take him back?
We had not even seen him yet. What was wrong? They kept him in the room for a few minutes as dozens of people rushed in and out. And then everyone rushed out of that room with him.
My husband followed them down the hall. He came back a few minutes later repeating their words,“Treacher Collins.”
Treacher Collins? I don’t know what that means??? As I’m still crying on the delivery table with my lifeless legs in the stirrups, my husband Googled Treacher Collins. We quickly learned that the internet is a very scary place. We were bombarded with all kinds of images of the most severe cases. Scary, considering we had not really seen our baby yet.
I lost it! Lost it on a level I have never experienced before. Complete hysteria set in. I remember apologizing to my husband thinking that I had done something wrong. Was I too old? Did I work too much? I did my fair share of complaining throughout the pregnancy. Was the universe, or God, punishing me for taking my pregnancy for granted?
My husband invited my parents and sister into the room to calm me down. They knew when the baby was not  there that something was wrong, but the did not understand why I was so upset. Everyone was silent as my husband read them the definition of Treacher Collins as written in the  Wikipedia entry he found on the syndrome. My family just looked confused as he read a bunch of complicated medical terms.
I finally said, “show them.” I’ll never forget the looks on their faces. Shocked, silent, awkward and scared. Is this what I will see for the rest of my life when people look at my son?
At this point everyone was in tears and trying to console me as I hysterically rattled off all of my concerns for his future - acceptance, friends and most of all, bullying. Medical needs can be treated and overcome, but emotional scars are so much more severe. Why was my child being punished? Why would the universe, or God, allow this child to be born into such cruel, emotional circumstances and medical hardships?
I completely shut down. I didn’t want to talk to anyone. Locked myself away and cried for two days straight without any food or sleep.  I had publicly posted about going to be induced on my social media accounts. I shut it all down! - I deleted everything and hoped people would not notice.  
When my husband finally talked me into going to see the baby, he didn’t look so bad. Cosmetically, he is a mild case, which was relieving, but he still has the classic medical problems that Treacher Collins babies have to endure (breathing, eating, and hearing). The bigger issue was that I wasn’t feeling a bond with him.
Over time, P.J.and I developed a bond. I love him so much. Energized by my personal experience, I want to give back to the craniofacial community. On Sunday, April 22nd, we hosted two charitable performances at Le Petit Cirque to help raise funds for P.J.’s hearing aids and the Love Me Love My Face Foundation. The two performances were a success. Still, I feel called to do more. I want to help other new parents develop a bond with their children born with facial differences. Here are my tips on how to handle the birth of your baby that also happens to have Treacher Collins.  
First, do not let anyone make you feel guilty for not feeling a bond right away. My husband was kind enough to give me the time I needed before I went to visit P.J. in the hospital. He did not pressure me to go with him. Everyone processes feelings in their own time. I encourage you to keep trying to go visit. One time, out of nowhere, and for no reason, it just happens. Instantaneously, you will fall in love with your baby. You will still be scared as ever, but in love! This child is now your child and you were meant to protect and nurture him or her.
Secondly, if you are not ready to talk publicly about the your child’s facial difference... DON’T! Have someone tell others about the circumstances of your situation, that you need space and privacy during this time. You can announce the birth of your baby when you are ready!
Crystal Kouri-Reynafarje and P.J. at the
Le Petit Cirque charitable
Thirdly, you did nothing wrong! In most cases, Treacher Collins and other facial differences happen because rare, genetic mutations occur at the time of conception. It is no one's fault.
Finally, and perhaps most importantly, CONGRATULATIONS on your new baby. Not many people will say that to you at the beginning of this journey. In fact, I’ll say it again.... CONGRATULATIONS!

1 comment:

  1. Crystal thank you very much for the article and for sharing your story. Thank you for bringing awareness and enlightening others on Treacher Collins Syndrome and the feeling that parents may have upon the first initial shock at birth. I have had the great pleasure of meeting you and PJ and I will always cherish that.

    As a grandparent, I too was shocked at Keegan’s birth and overwhelmed with the life saving measures that were taken to save her life. Initially I was upset when the medical personnel would congratulate me on the birth of Keegan and I would think to myself how dare they say that, what is wrong with them, she has Treacher Collins Syndrome! I was finally able to touch Keegan (after an hour of life saving measures) and see her for the second time in her life. I instantly fell in love, especially when she grabbed my finger with her little hand.

    Yes they have craniofacial differences but they are human beings who have normal intelligence and normal life span. They are just like everyone else and deserve to be treated as such. But everyone knows different, children with facial differences are judged, bullied and stared at. It is up to us to educate others and to get the word out there and raise more awareness. It is great to be a part of CCA and to be able to meet other families with similar issues and circumstances and to see the work they do for us.

    Crystal I am proud of you and other parents for being their child’s advocate and getting done what is needed for your kids. As tough as it can be, continue on with what you do for PJ and others. He needs you and we need more people like you. They are truly blessings and part of God’s plan.


We welcome and encourage all readers to post feedback, however, we reserve the right to remove any comments that are deemed offensive or unrelated to the topic of discussion. Thank you for understanding and for helping us to foster a healthy environment for the families that we serve.