Akilah’s Nose: What is Frontonasal Dysplasia/Median Cleft Face?
Posted on Published:
Special thanks to Children’s Miracle Network Hospitals for sponsoring this post!
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.
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.
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…
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.
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.
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.
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.
An exorbitant 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.
Pin It on Pinterest
Shares
{"id":null,"mode":"button","open_style":"in_place","currency_code":"USD","currency_symbol":"$","currency_type":"decimal","blank_flag_url":"https:\/\/iriemade.com\/wp-content\/plugins\/tip-jar-wp\/\/assets\/images\/flags\/blank.gif","flag_sprite_url":"https:\/\/iriemade.com\/wp-content\/plugins\/tip-jar-wp\/\/assets\/images\/flags\/flags.png","default_amount":500,"top_media_type":"none","featured_image_url":false,"featured_embed":"","header_media":null,"file_download_attachment_data":null,"recurring_options_enabled":true,"recurring_options":{"never":{"selected":true,"after_output":"One time only"},"weekly":{"selected":false,"after_output":"Every week"},"monthly":{"selected":false,"after_output":"Every month"},"yearly":{"selected":false,"after_output":"Every year"}},"strings":{"current_user_email":"","current_user_name":"","link_text":"\u2665 Leave me a tip? \u2665","complete_payment_button_error_text":"Check info and try again","payment_verb":"Pay","payment_request_label":"Iriemade","form_has_an_error":"Please check and fix the errors above","general_server_error":"Something isn't working right at the moment. Please try again.","form_title":"IRIEMADE","form_subtitle":null,"currency_search_text":"Country or Currency here","other_payment_option":"Other payment option","manage_payments_button_text":"Manage your payments","thank_you_message":"Thank you for being a supporter!","payment_confirmation_title":"Iriemade","receipt_title":"Your Receipt","print_receipt":"Print Receipt","email_receipt":"Email Receipt","email_receipt_sending":"Sending receipt...","email_receipt_success":"Email receipt successfully sent","email_receipt_failed":"Email receipt failed to send. Please try again.","receipt_payee":"Paid to","receipt_statement_descriptor":"This will show up on your statement as","receipt_date":"Date","receipt_transaction_id":"Transaction ID","receipt_transaction_amount":"Amount","refund_payer":"Refund from","login":"Log in to manage your payments","manage_payments":"Manage Payments","transactions_title":"Your Transactions","transaction_title":"Transaction Receipt","transaction_period":"Plan Period","arrangements_title":"Your Plans","arrangement_title":"Manage Plan","arrangement_details":"Plan Details","arrangement_id_title":"Plan ID","arrangement_payment_method_title":"Payment Method","arrangement_amount_title":"Plan Amount","arrangement_renewal_title":"Next renewal date","arrangement_action_cancel":"Cancel Plan","arrangement_action_cant_cancel":"Cancelling is currently not available.","arrangement_action_cancel_double":"Are you sure you'd like to cancel?","arrangement_cancelling":"Cancelling Plan...","arrangement_cancelled":"Plan Cancelled","arrangement_failed_to_cancel":"Failed to cancel plan","back_to_plans":"\u2190 Back to Plans","update_payment_method_verb":"Update","sca_auth_description":"Your have a pending renewal payment which requires authorization.","sca_auth_verb":"Authorize renewal payment","sca_authing_verb":"Authorizing payment","sca_authed_verb":"Payment successfully authorized!","sca_auth_failed":"Unable to authorize! Please try again.","login_button_text":"Log in","login_form_has_an_error":"Please check and fix the errors above","uppercase_search":"Search","lowercase_search":"search","uppercase_page":"Page","lowercase_page":"page","uppercase_items":"Items","lowercase_items":"items","uppercase_per":"Per","lowercase_per":"per","uppercase_of":"Of","lowercase_of":"of","back":"Back to plans","zip_code_placeholder":"Zip\/Postal Code","download_file_button_text":"Download File","input_field_instructions":{"tip_amount":{"placeholder_text":"How much would you like to tip?","initial":{"instruction_type":"normal","instruction_message":"How much would you like to tip? Choose any currency."},"empty":{"instruction_type":"error","instruction_message":"How much would you like to tip? Choose any currency."},"invalid_curency":{"instruction_type":"error","instruction_message":"Please choose a valid currency."}},"recurring":{"placeholder_text":"Recurring","initial":{"instruction_type":"normal","instruction_message":"How often would you like to give this?"},"success":{"instruction_type":"success","instruction_message":"How often would you like to give this?"},"empty":{"instruction_type":"error","instruction_message":"How often would you like to give this?"}},"name":{"placeholder_text":"Name on Credit Card","initial":{"instruction_type":"normal","instruction_message":"Enter the name on your card."},"success":{"instruction_type":"success","instruction_message":"Enter the name on your card."},"empty":{"instruction_type":"error","instruction_message":"Please enter the name on your card."}},"privacy_policy":{"terms_title":"Terms and conditions","terms_body":null,"terms_show_text":"View Terms","terms_hide_text":"Hide Terms","initial":{"instruction_type":"normal","instruction_message":"I agree to the terms."},"unchecked":{"instruction_type":"error","instruction_message":"Please agree to the terms."},"checked":{"instruction_type":"success","instruction_message":"I agree to the terms."}},"email":{"placeholder_text":"Your email address","initial":{"instruction_type":"normal","instruction_message":"Enter your email address"},"success":{"instruction_type":"success","instruction_message":"Enter your email address"},"blank":{"instruction_type":"error","instruction_message":"Enter your email address"},"not_an_email_address":{"instruction_type":"error","instruction_message":"Make sure you have entered a valid email address"}},"note_with_tip":{"placeholder_text":"Your note here...","initial":{"instruction_type":"normal","instruction_message":"Attach a note to your tip (optional)"},"empty":{"instruction_type":"normal","instruction_message":"Attach a note to your tip (optional)"},"not_empty_initial":{"instruction_type":"normal","instruction_message":"Attach a note to your tip (optional)"},"saving":{"instruction_type":"normal","instruction_message":"Saving note..."},"success":{"instruction_type":"success","instruction_message":"Note successfully saved!"},"error":{"instruction_type":"error","instruction_message":"Unable to save note note at this time. Please try again."}},"email_for_login_code":{"placeholder_text":"Your email address","initial":{"instruction_type":"normal","instruction_message":"Enter your email to log in."},"success":{"instruction_type":"success","instruction_message":"Enter your email to log in."},"blank":{"instruction_type":"error","instruction_message":"Enter your email to log in."},"empty":{"instruction_type":"error","instruction_message":"Enter your email to log in."}},"login_code":{"initial":{"instruction_type":"normal","instruction_message":"Check your email and enter the login code."},"success":{"instruction_type":"success","instruction_message":"Check your email and enter the login code."},"blank":{"instruction_type":"error","instruction_message":"Check your email and enter the login code."},"empty":{"instruction_type":"error","instruction_message":"Check your email and enter the login code."}},"stripe_all_in_one":{"initial":{"instruction_type":"normal","instruction_message":"Enter your credit card details here."},"empty":{"instruction_type":"error","instruction_message":"Enter your credit card details here."},"success":{"instruction_type":"normal","instruction_message":"Enter your credit card details here."},"invalid_number":{"instruction_type":"error","instruction_message":"The card number is not a valid credit card number."},"invalid_expiry_month":{"instruction_type":"error","instruction_message":"The card's expiration month is invalid."},"invalid_expiry_year":{"instruction_type":"error","instruction_message":"The card's expiration year is invalid."},"invalid_cvc":{"instruction_type":"error","instruction_message":"The card's security code is invalid."},"incorrect_number":{"instruction_type":"error","instruction_message":"The card number is incorrect."},"incomplete_number":{"instruction_type":"error","instruction_message":"The card number is incomplete."},"incomplete_cvc":{"instruction_type":"error","instruction_message":"The card's security code is incomplete."},"incomplete_expiry":{"instruction_type":"error","instruction_message":"The card's expiration date is incomplete."},"incomplete_zip":{"instruction_type":"error","instruction_message":"The card's zip code is incomplete."},"expired_card":{"instruction_type":"error","instruction_message":"The card has expired."},"incorrect_cvc":{"instruction_type":"error","instruction_message":"The card's security code is incorrect."},"incorrect_zip":{"instruction_type":"error","instruction_message":"The card's zip code failed validation."},"invalid_expiry_year_past":{"instruction_type":"error","instruction_message":"The card's expiration year is in the past"},"card_declined":{"instruction_type":"error","instruction_message":"The card was declined."},"missing":{"instruction_type":"error","instruction_message":"There is no card on a customer that is being charged."},"processing_error":{"instruction_type":"error","instruction_message":"An error occurred while processing the card."},"invalid_request_error":{"instruction_type":"error","instruction_message":"Unable to process this payment, please try again or use alternative method."},"invalid_sofort_country":{"instruction_type":"error","instruction_message":"The billing country is not accepted by SOFORT. Please try another country."}}}},"fetched_oembed_html":false}
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.