When our daughter was first born, I just thought she needed to be wiped off.
She had a thick whiteness covering her entire body, and there was a sort of confused panic from the medical staff in the room. She was whisked out of our room almost immediately and taken to the nursery before being transported to the nearby neonatal intensive care unit.
Somewhere in all of the confusion, we realized that she couldn’t simply be wiped off. The thick covering on her was her skin.
When Evan and I found out we were expecting a daughter, who would be joining our then-1.5 year old son Connor, we were elated. One boy and one girl seemed to fulfill a sort of ideal expectation for our family, and Evan couldn’t wait to have a Daddy’s girl with bouncy pigtails.
Brenna Helen Marie arrived on December 19, 2011, and shook up our whole world. She was diagnosed with a rare and severe skin disease called Harlequin Ichthyosis (har-la-kwin ick-thee-oh-sis). Her skin was formed in thick plaques with deep red fissures in between, pulling so tightly across her body that her fingers and toes are permanently shortened, her eyelids were flipped inside out, and her nose and ears were almost completely covered by skin. (Read more about Harlequin Ichthyosis here.)
It took about two days before I fully realized how severe her condition was and that it was likely that Brenna may not make it. On Christmas Eve 2011, when Brenna contracted an aggressive blood infection, we begged God all night not to let her die on Christmas as we sat anguished by her bedside, wondering when we would have to say goodbye, wondering if we would even get a chance to hold our baby girl before she went to heaven.
But Brenna fought through that infection, and she has battled through multiple surgeries, skin infections, hospitalizations, and many other challenges caused by this severe condition, from motor delays to food intolerances, in her short life. (Read a 5-part series about Brenna’s birth and first week of life here.)
Harlequin Ichthyosis is a genetic condition, and there is no cure. It has profoundly affected our lives, as we constantly monitor for temperature (Brenna can’t sweat) and try to minimize infection risk. Our days are filled with applying Aquaphor to keep her skin moisturized and comfortable, a long daily bath where we can exfoliate the extra skin she makes, and lots of eating because Brenna’s body uses so many calories simply to produce skin!
At four years old, Brenna is the size of an 18-month-old, with deep-reddish skin that constantly peels. She has very little hair because the over-production of skin kills off her hair follicles. Her extremities and some of her features are tiny because her tight original skin didn’t allow them to grow.
Because of this, we encounter a lot of stares, questions and ignorance from people who assume we “let” her get severely sunburned.
But our days are also full of uninhibited joy, real contentment, gratitude and faith in God. Brenna is determined, extroverted, and sweet and sassy all at the same time. She is so attached to her parents and shares a unique bond with her brother – they are each other’s biggest fans.
Physically, Brenna is much different that we expected. And we are discovering day by day, week by week, just how beautiful different can be.
Read more about our journey and discovering the tremendous beauty in all that is different and unexpected in my book, A Different Beautiful, releasing August 1.
I remember when baby Hrenna was brought up to the nicu. We didn’t know it Then because of all the confidentiality laws who she was or what was wrong but seeing nurses and doctors going to check on Brenna in gowns we knew that something was happening that made her more fragile to the outside world . My son was only born a month before Brenna on 11-7-11.. We prayed for the tiny baby that we did not know. I’m so glad I’ve gotten to read so much of your blog and learn so much about your beautiful baby girl!!!
Aw thank you so much.
Was there any indication that something wasn’t right with her before she was born? I’ve read somewhere that people affected by the disorder have to inhered the defective gene from both parents. So does that mean that you and your husband are carriers of the disorder? Are there any other family members affected by the disorder that you know of?
I wish you and your beautiful little family all the best!
No, her disorder was completely unexpected. Yes, my husband and I are both carriers, and so is our son. No other family members are affected. Thank you for your well wishes 🙂
Those chubby cheeks!! So adorable.
Right?! That’s the first thing I noticed was those sweet little cheeks. What an adorable girl she is!
I stumbled across your blog while searching for the Step2 Waterfall toy. You have a beautiful family. Thanks for sharing your story and God bless you all!
Hi! I just read your article on ScaryMommy about Physical Differences. I wanted to say “Thank you” for it. I was born with Rothmund Thomson Symdrome (also a rare disorder with skin differences, I look like I have a red rash all over my body, it turns bright when I’m hot and purple when I’m cold, my parents are carriers, and my brothers were born unaffected, it seems to target more females than males as well) 27 years ago, and I grew up with many negative responses. Often people will glare at me and act like I’m contagious. I prefer people to talk to me and ask me, even if I’ve heard it a million times and will continue to hear it for the rest of my life. My personal response to children when they ask me (even if their parents are glaring at them and trying to shush them or reprimand them)”What’s wrong with you?” or “Why do you look like that?” or “Why are you so red?!” is I will find something about them to compliment them on, I will say “I was born like this, just like you were born with pretty Blue eyes (or whatever colour)/or lovely Brown hair!” and they smile and accept it and move along. Anyway, I just wanted to say “Thank you” for your article and I think your daughter is beautiful and I hope she grows up thinking the very same and that it’s OKAY to be different! x
Beautiful way of responding!
What a sweet and gorgeous girl you have. She is lucky to have you, and you are lucky to have her. A true gem.
Hugs,
Erin
God bless you and your Beautiful family. I came across your website because I am also going to receive the katelynn dress from stitch fix. Prayers for your sweet Brenna. You are an inspiration!
Your daughter is beautiful, I am reading your blog in Sydney Australia, I am from Christchurch New Zealand. Wishing you and your family all the very best for the future.
What a beautiful little girl!! I have a 15 year old son with autism and a few other acronyms for diagnoses that really don’t even to begin to describe how amazing he is!! We get those stares and questions quite a bit as well….”why is he so loud”…”does he always talk like that”….”why does he carry around dinosaurs”…..and my personal favorite…….”is there something wrong with him”…..I want to say, “Why yes, there is something wrong with him, he is amazing, beautiful, kind and compassionate, thanks for noticing.” However, I know what they are really asking about; why is he so different from me.
I encourage questions from all age groups because honestly, my son is a man-child, he is a 9 year old little boy trapped in the body of a man. Ethan loves dinosaurs, playing tag and running with his dogs, he could care less about music, video games or sports. Yes, he may be a little different from the neuro-typical 15 year old teenager but he is not LESS.
Thank you for sharing your journey with others. We so often get wrapped up in our own worlds and fail to see that there are other worlds all around us that we need to take notice of and teach our children about. I am just as guilty with our son because he is the first person to point out any little physical difference in everyone he encounters!! I try to tell him that he can ask me any question but do not make someone else feel uncomfortable, just like he does sometimes whenever he attempts to talk to people and they back away like he has anthrax or something. Ethan doesn’t even know he has autism, he thinks he is just loud and that is how he refers to himself, “they are loud like me”…that is his description of autism.
Continue educating others, people are always afraid of what they don’t know….or at least that is my philosophy on their ignorance.
Hi, my husband and I sat behind you on our flight from Chicago to San Diego. We had just left visiting our son, daughter in law and 3 week old grandson. He was also born with a condition, but hopefully treatable. Of course we were curious, assumed she had had some kind of procedure. My husband noticed your husbands shirt, and we had to look it up. Your daughter seemed so happy, didn’t appear to be in any pain, and was like any other little girl. I really admire you and your family, I’m sure it hasn’t been easy, but she looks like a bundle of love!
Blessed little cherub!!!
What a joy she appears to be.
Much love to you all xx
Brenna, you are a very beautiful and courageous girl :-). I just wish people would stop judging others by their appearances. I teach my kids not to judge others by the way they look or how they are dressed and I pray they will be able to see past their exterior. The only thing important is the “inside”. We are all beautiful the way God has made us and your little girl is a real gift from above.
Thank you for sharing your story. My husband and I just became parents a few months ago to our daughter .
She was born intersex. Looks female outwardly but has xy but also testes. Since birth there has been changes because she can process some testosterone making genetelia change .
We still don’t have a specific diagnosis and we have been bombarded with really difficult decisions on gender, surgeries, and just grieving of expectations.
But we love our daughter and her personality. The beauty of her innocent joy as a baby.
It is very hard. Your experience helped
What a sweetheart Brenna is. God bless you all. Hugs.
Brenna, You have a beautiful daughter and I applaud you for writing the book. My daughter Aliya was also born with Harlequin Ichthyosis in 2005. Aliya is amazing – she is beautiful, kind and full of life. Recently, I wrote a piece about a heart breaking situation we encountered, I thought you may want to read it — https://medium.com/@durreen/i-could-not-protect-my-child-77863e12d03#.l3yjsbm0z
From one Mom to another, I am sending you a big hug. We are blessed to have these amazing daughters.
Durreen
Praying God’s richest blessings on your sweet family! What a joy Brenna must be!
So thankful I decided to ‘click’ on your blog link. As I read about your tenacious, spirit-filled Brenna, something my sister said years ago came into my mind. She and her husband had a child with severe allergic reactions to so many things – but in those first few years, they did not know this. After a few years of misdiagnoses and countless physician consultations, a diagnosis was made. Fast forward to today: In conversation about those early years, she said: “We don’t know why God allowed all these difficult years, but He ENTRUSTED this situation to us, and so that is all we really needed to know.” Meaning, only God knew exactly what parent(s) were needed for this child to flourish. Exactly what I thought of after reading your story!
That is just beautiful, thank you for sharing!!
Thank God your baby lived and thank God for your beauty that you express through her.
Thanks Courtney for writing this book. I would love to read it. I am a nurse manager in a busy pediatric unit at a large teaching hospital. God has truly blessed me because I get to work with so much beauty. Beautiful children, beautiful families, and beautiful coworkers are all around and each unique in their own special way. I thank God for your willingness to perservere through your hard times and share your story with others. May God bless you and your family, your work, and especially little Brenna.
Thank you for sharing Brenna’s story. She is a beautiful gift from God! Her story made me realize just how much we take for granted & what true beauty is. God bless you all.
I would like to thank the Lord Jesus for his answering your prayers for your little one to live and bring you great joy.
I also would like to thank you for your growth in Christ, your patience, your endurance,
your perseverance.
I can not even begin to imagine your pain, and I just want to say thank you for being brethren that trust in Christ for everything and your example to me of strength.
Hi,
I found your blog thru the Proverbs 31 devotion.
My dad has Ichthyosis. His parents were carriers, but he was the only one with the disease. His siblings were normal. Mom said it used to be called scolded baby syndrome.
🙁 Horrible name. I don’t know which version he has.
When my parents decided to have a child, Dad was cautious; he didn’t want me to go thru what he’s been thru. Mom said when I was born, I was the only baby that had a dermatologist to check them out. 🙂 I don’t have the disease.
My Dad is 76 and he’s lived a completely normal life. The only serious health scare we’ve had was melanoma. Back in the day, they tried to treat his skin condition with radiation; they believe this is where the melanoma stemmed from. He never wears shorts or short sleeves, always covered up due to the sensitivity of his skin so the radiation is the only link they could think of. That was 16 years ago. People who do not know him think he’s sunburned, but the people who know him, don’t notice his skin; they see him.
He will always have the flakey red skin, but that has not stopped him from living a fulfilling life.
As soon as I saw your daughter, I smiled. She’s beautiful and reminds me of my sweet Dad.
This is so sweet, thank you for sharing!!
I think she is adorable. I am so sorry that she has that disease. I will be praying for her.
You are absolutely amazing!! I hope with God’s endless Love and abundant Grace, guide everyone who knows your families story, leads you into much Greater things. You are amazing, thank you and God bless you!!
Courtney, you are such an amazing woman, God richly bless you. Thank you for taking care of Brenna, the love you show her each and everyday amidst all the tasks you have to do. I am greatly blessed and encouraged by your devotion. Prayed for Brenna. God bless your family, give you strength to take you through each day. In Jesus’ Mighty Name, Amen.
Hello
I saw your post on Proverbs 31 email.
I was born with a genetic skin disorder Neurofibromatosis. It is an autosominal dominate disorder. My father had it as well as 5 of 8 children. I wanted to encourage you that Gods grace is so awesome. He will provide the grace to get through. I did struggle with this disorder because my appearance is severely affected. But God healed me in a way I did not expect. I attended a bible study where we prayed and meditated on scripture out loud. We were praying 139 and God provided a vision oaks I had my eye closed soaking in the words God formed us in the womb. I visualized myself in the womb. I still had the skin disorder. God was watching me being formed. He was smiling and He reached out His hand and placed my heart in y body I visualized this as a gift. I believe this gift is the gift of grace.
God created myself and your daughter for a purpose. He will provide the love and mercy to carry on. This was not a mistake. (For most of my life I felt like I was a mistake). I know now this was a lie from the enemy.
God provided Hrenna with a family that is perfect for her.
God bless you.
Thank you for sharing your story. It is so inspiring! My challenge is to recover from alcoholism/addiction/codependency and mental illness. But my relationship with Jesus Christ has made all the difference as I struggle to maintain a stable lifestyle each and every day. I would love to win a copy of your book! I am always looking for books that can help inspire me and I like to share them with other people who can be helped by them as well! God bless you!
I came across your blog when one of my friends forwarded your story about painting nails. My heart rejoiced and my tears cleansed my face. Both of our daughters have wildly different mutations that have catapulted our family into a “different” kind of beautiful, and your story reminded me so much of our own…God is faithful. Thanks for sharing your heart.
Hi! I stumbled upon your Instagram and saw something I immediately recognized, ichthyosis! My brother Ryan was born with the lamellar (probably mispelled)) form. He too looked very similar to your kids. He eventually outgrew not sweating when he got older and now sweats. His skin has also gotten a lot better with age and new meds. Brought back a lot of memories of when he was little. He’s now 32. Thanks for sharing your story. Best to you and your kids!!
Thank you for sharing!! So glad to hear how well your brother is doing!
Good morning from BC ! I found your blog totally by luck… a DVD called “7 hours to go” came up in a library catalog search, I looked up one of the actors, who was born in Nagpur, India. Never heard of that, so I went to look up the pictures. A Harlequinn baby was born in that city recently and a picture came up of her as well. Never heard of that, so I went to look that up and found your blog. You have a beautiful little girl ! Bless your and her heart.
Your baby is beautiful.
She is absolutely precious, I came across your family photo on instagram, and I was drawn to click on your link in your bio and tell you what a blessing you have. After a long stressful day at work, I look through your pictures and it makes me smile 🙂 thank you for sharing yours and her story 🙂 God bless you and your beautiful family!
She is so beautiful and you are an amazing mother 🙂
So beautiful! Brenna and your family will fprever be in my prayers 💕💕💕💕💕🙏