iriemade Skip to Content

Akilah’s Nose: What is Frontonasal Dysplasia/Median Cleft Face?

Special thanks to Children’s Miracle Network Hospitals for sponsoring this post!

cleft nose, cleft face, frontonasal dysplasia, cfnd, cfns, #Akilahsnose

Akilah Skye, our long-awaited baby girl, came to us on the sixteenth day of August, after a very short labor of just three hours. Upon her descent, she was scooped up, wrapped in a blanket and placed into my arms. Finally, she was here and I could soon relax and be home to see Jayden off to school the following week.

Exhausted, I looked down to get a better glimpse of our HamburgHer (her nickname while in utero) and there it was, the what if that occupied a little too much space in my head from the moment I saw those two pink lines. There were no signs or warnings or anything like that. I just felt the need to prepare for whatever, become resilient and hustle for the next nine months.

“She has a big nose,” my husband commented from a place of shock and concern. Her nose, visibly flattened yet pronounced with a divot, was the start of a new journey neither of us, I felt, would have been prepared for now, but certainly not three kids ago. After spending about an hour cuddling with and nursing baby Akilah, she was off for an extended round of tests.

cleft nose, cleft face, frontonasal dysplasia, cfnd

We would meet the neonatologist. She would come in and mention one thing, then another thing. They needed to put a scope down her nose to make sure things were clear, that her cry face was a little crooked (we all have that crooked left lip curl in my maternal family) so bells palsy was a concern, the ears, nose and throat specialist would be in to see Baby, as would a geneticist.

Geneticist.

See. It’s all fun and games when we’re all casually talking about good genes and general quirks passed down through genetics, but there’s nothing comforting about having a geneticist involved in the care of your newborn.

The geneticist explained to us that it appeared that Akilah had a minor form of Craniofrontonasal Dysplasia. It is a condition in which a cleft was formed in her face (similar to a cleft palate), causing a shift in the formation of her nose. Her palate wasn’t affected; neither was the function of her nose. The condition is very rare, but seems to affect more females than males. Wanting to believe that the cramped quarters of my uterus and carrying low was the cause of her nose malformation and any other asymmetry, we continued to smile and nod.

cleft nose, cleft face, frontonasal dysplasia, cfnd

The geneticist pulled out a book and shared some photos of other children who had more severe cases of the condition. Can you say awkward? *sigh* This was our moment to celebrate our new baby girl, but instead we were entertaining the idea of being two already worn out parents to a special needs child. The point was to further explain that the cleft usually causes wide-spaced eyes… but whatever… Brandy Norwood rocks her wide-spaced eyes, honey.

After doing some research, I discovered that frontonasal dysplasia usually causes a widow’s peak hairline as well… but whatever… I thought it was the cutest ever, now shared with her paternal Gamma and Titi. After we had gotten enough of the photographs, the geneticist asked us a round of questions, then reassured us that we did nothing wrong. She told us not to even think about going down that path of backtracking, calculating and overthinking. Clearly, she doesn’t know who I am…

cleft nose, cleft face, frontonasal dysplasia, cfnd

While on the topic of genetics, we went over the probability of certain cancers and the onset of mental illness in the both of us as parents as well as passing them on to our children. She answered pressing questions that I’ve had about myself and alleviated fears I’ve been carrying as I near thirtyhood. It’s funny how receiving my baby’s diagnosis turned into a lesson and relief regarding my cognitive health. The geneticist was a passionate one and knew her stuff. She gave us names of top child craniofacial experts in the region, fun facts, and most importantly hope.

frontonasal dysplasia
Hope keeps us strong in times of need and keeps us brave in times of fear. – Jade Raber

After all was said and done, baby Akilah’s health report was great and we would continue to watch her as she developed. If we had any concerns, we’d be able to take advantage of the Early Intervention program available to children diagnosed with conditions that may affect their development. As for the physical appearance of her nose, we decided to consult with a plastic surgeon who can work on the symmetry a bit. I don’t want to get into the why, because it’s very obvious. In a perfect, non-hurting, non-beauty obsessed world, we’d leave her nose as-is. We just want to ensure that she thrives and lives a happy life.

 

10/16 Hightailed it out of the children’s hospital with good news! #latergram #akilahgram #akilahsnose

A photo posted by Sheena Tatum (@sheenatatum) on

In October, we had our first consultation at the children’s hospital. We saw a craniofacial plastic surgeon, as well as a neurosurgeon. They wanted to be sure that her nose was free of brain tissue and any other masses, so she had a CT scan and an MRI, which confirmed that her nose was only a cosmetic condition. We will continue our journey with a meeting next month. They would like to monitor her cranial sutures to make sure they aren’t closing prematurely. The results of the previous scans showed that they were normal. Our next consultation will be another step towards surgical planning. I will be documenting behind the scenes, and will share details when I feel that I can.

cleft nose, cleft face, frontonasal dysplasia, cfnd

The support that we received in Akilah’s care wouldn’t be possible if it weren’t for Riley Children’s Hospital and the Children’s Miracle Network. There are 170 children’s hospitals in the network, and they are able to provide the very best care because people donate. Children’s Miracle Network Hospitals provide more than $3.5 billion in charitable care every single year in the U.S. Donations stay local and are used however the hospital needs them the most. These donations help purchase life-saving equipment, conduct research and pay for the special things that are crucial to a child’s healing from specialized therapy programs, equipment in multiple sizes, playrooms–the whole nine.

CMNHospitalslogo_color

A substantial amount of money goes into running children’s hospitals, and they are always in great charitable need. Put your money where the miracles are. Support your local Children’s Miracle Network Hospital. We’re committed to doing what we can to support the network that supports us back.

Alina Stewart

Wednesday 12th of August 2020

Hi,

I am currently sitting in an interview with my Justin. My Justin is a twin and will be 20 years old August 25th. Justin was born with frontalnasal dysplasia. Akilah looks so much like my Justin. She is gorgeous! Look him up on Instagram Smiling Within or _justinstewart.

Alina

Sheena Tatum

Wednesday 12th of August 2020

Hi Alina,

Justin and I follow each other and keep in touch! I'm so happy to have connected with him! He's such a light! Thank you so much! <3

Jane Solomon

Friday 20th of December 2019

My son has same issue m,please I need the name of the hospital where Akilah's surgery was done. Thanks.

Sandra Trujillo

Friday 28th of February 2020

Hello, my daughter has the same problem, we're from Mexico, and we found a hospital in San Diego where they started to see Renée.

Sheena Tatum

Sunday 22nd of December 2019

Hi Jane!

Akilah sees Sunil S. Tholpady at Riley Children's Hospital in Indianapolis, IN. Here's an article featuring him: https://www.rileychildrens.org/connections/rileys-plastic-surgeon-for-kids-this-isnt-about-vanity

Candice

Wednesday 12th of April 2017

Wow, I was just informed that my daughter was diagnosed with the same thing. I'm still learning about it because I haven't had the chance to talk back to genetics... they take so long to get back with me. At first I was a little bothered but now I'm gaining a little more understanding about it yet still have so many questions. My baby is now 11 months old and she is beautiful as will as your baby. She is reaching milestones and the condition didn't seem to affect her brain. I believe she will have a normal life. This really helps and inspires me. Thank your for sharing your story. I would like to reach out to you personally if I may about some questions I have. Only if That is possible. Thank you!

Cami

Thursday 25th of August 2016

I have two toddler-ish boys and a baby girl too! Your little girl is beautiful, just as God delivered her to you. And I can see in her eyes she feels loved by her family. Nothing can replace or do better than that! God bless you, little Akilah!

Elle

Friday 17th of June 2016

Your babygirl is so beautiful. What a precious little girl. Thanks for sharing her story. Greetz from Amsterdam.

Comments are closed.
error: Content is protected !!

Pin It on Pinterest

Shares