More Than a Diagnosis – Kole’s Story

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“Last month, I received a phone call that would forever touch my life. It was from a wonderful woman in Arizona named Betsy. She is a pediatric nurse for a sweet boy named Kole. She told me about his family’s plans to visit San Diego for their son’s Make-A-Wish trip. She wanted to find a photographer that would be the perfect fit to capture this special time for Kole’s family. She found my More Than a Diagnosis blog posts and the rest is history.  It was an honor to meet this family and document this momentous trip for them.

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I also have the privilege to share Kole’s story with you as a part of my More Than a Diagnosis series. Throughout my life, I have been blessed to know many amazing people that were given a special needs or terminal diagnosis. I do not believe that this was by accident. They have stories to tell, and I want to help them tell those stories.  It is my goal to continue to capture beautiful portraits of those that were given a diagnosis and did not let it stop them from living happy and fulfilled lives. They are an inspiration. I want to use my platform of photography and social media to help them reach those that may need it the most.

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I asked Kole’s mom, Kirsten, to tell us more about their lives. I asked her about when they received his diagnosis, challenges that they have faced, what life is like for Kole, and some of her favorite things about him. This is their story. Thank you Kirsten, for sharing it with us.

When did you find out about Kole’s diagnosis? 

I got pregnant at 19 right after his dad and I got married. We went to our routine appointment with the OBGYN and they offered to do a blood test to see if there were any concerns and since it was covered my insurance, I said okay. I ended up getting a phone call that they were sending us to see a specialist because the numbers were high and there was a lot of amniotic fluid. That phone call changed everything. We ended up seeing the specialist every single week till he was delivered. Every single week we were told that his heart beat would not be there the following week and every week it was still beating. He did not move much so I never knew if he was still holding on or not. Every few times we would go in they would find something else that was “wrong” and be even more sure that he was not going to make it. They induced me at 36 weeks because he was not growing and the delivery was very traumatizing and complicated and he was born at 3 lbs 5 ounces and he stayed in the NICU for 2 months. 

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How did you find out? How did you feel when you found out?  

We knew that something was going on ever since being sent to the specialist, but we had thought that his diagnosis was down syndrome the whole time. They offered to do amniocentesis but we opted out due to the risk of miscarriage and it wasn’t worth it to lose him. It wasn’t until he was actually born and had blood drawn that we were able to find out his actual diagnosis and more kept piling on as time went on. I remember sitting in the head doctor’s office when Kole was 3 days old, the geneticist was in there and he said that Kole has been diagnosed with Ring 13, Partial Trisomy 13, and Monosomy 13 and that he will probably not make it out of that hospital and if he does he will not make it through a common cold and if he is lucky enough to make it through that, he will likely not live past 10 years old. THAT is all I remember him saying because as a 20 year old girl hearing that about my child was extremely hard to hear. I completely shut down and stared at my hands and the words just ran through my head over and over as they continued speaking with other family members that were in the room and able to take notes for me. When I was told that he was blind I was in shock but more at the bluntness and shortness from the doctor that had told me. Once the anger of that settled it was difficult information to process but it was not the end of the world. It was more when I was also told that he was deaf that it hit more close to home. It suddenly made sense that the other 3 babies in his room would cry in their cubicles whenever it was loud and my little boy just slept right through it all. Barely moved an inch. He never startled. He was the quietest baby. And I never knew why. But, then I did. It was a mixture of emotions but I did feel thankful to have answers and be able to move forward with knowing what I needed to know and figuring out a different way to navigate how to communicate with him which we did through touch. He also got a cochlear implant on his right side that he hears through and he loves music.

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What exactly is he diagnosed with and how does it affects his life? 

  • His main diagnosis are: Ring 13 (This is Kole’s dominant diagnosis, Rare chromosome disorder), Partial Trisomy 13 (Chromosome Disorder), Partial Monosomy 13 (Chromosome Disorder), Poland Syndrome (Birth Defect of underdevelopment with webbed fingers and absence of chest muscle on one side), Moebius syndrome (A rare neurological condition that affects the muscles that control facial expression and eye movement. The signs and symptoms of this condition are present from birth)

The ripple effects of these syndromes and disorders are:

  • Absent Corpus Callosum (Middle part of the brain)
  • Obstructive Sleep Apnea (Doesn’t breathe well while sleeping, us oxygen, change position)
  • Obstructive Airway (Change position, sit up, use oxygen)
  • Hypoventilation (Shallow breathing at an abnormally slow rate, resulting in an increased amount of carbon dioxide in the blood)
  • Deaf (Use cochlear Implant while awake)
  • Blind (Can see bright lights in his LEFT eye)
  • Coloboma in both eyes (Effected the optic nerves, the macula is fine)
  • Retina detached in right eye (Eye is shrinking and is a “sick” eye. Potential future prosthetic eye, use medications to keep it comforted)
  • Imperforated Anus (No anus formed but a fistula formed right above where the anus would be and we dilate the fistula to keep him pooping through it)
  • Deformed Left Hand (Part of the Poland Syndrome)
  • No muscle or nipple on left side of chest (Part of the Poland Syndrome)
  • Eczema (Dry Skin)
  • Tache Cerebrale (Breaks out in rash under the skin and it goes away within minutes, not harmful, caused neurologically)
  • Dermographism (Exaggerated welting when the skin his barely stroked, not harmful, goes away within minutes)
  • Fusing of left elbow (It doesn’t turn in some directions so BE CAREFUL especially while changing his shirt)
  • VERY LOW IMMUNE SYSTEM (Wash hands regularly and use sanitary precautions)
  • Septo-optic Dysplasia (Underdevelopment of the optic nerve, pituitary glad dysfunction, absent septum pellucidum (part under the corpus callosum which he is missing as well)
  • Low Cortisone Levels (Hormone released when the body is stressed. Production of cortisone by adrenal glands are too low because the pituitary gland is not sending proper signals) 
  • Irregular Circadian Rhythm (Non-24 Sleep/Wake Disorder) (A condition often experienced by those blind/visually impaired which caused them to be unable to follow the typical daytime/nighttime schedule of sleep often causing insomnia)
  • Megameatus Hypospadias (Congenital defect, location for outlet of urine is on the undersurface of the penis rather than on the tip. CANNOT circumcise until this is surgically fixed)
  • Kole is unable to walk and is nonverbal.

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What would you tell someone that is just learning about their own child’s diagnosis? 

It sounds harsh, but I just hope that people finding out diagnosis know that it is not the end of the world. Their child is unique. Their child is special. Their child will teach them things that they would never learn if it wasn’t for that child. I won’t lie, it’s a hard life. But, it is full of so much beauty that I never knew. I am not the same person that I was when I was 20 and I had to change and grow up real fast. And I wouldn’t change that for the world. There are people out there who get it. It felt so lonely at first and like no one would ever know what we are going through. But, as I branched out and learned that there are other deaf blind children and kids that are similar to Kole (NEVER THE SAME because they are all different in their own way) that I was not alone. There were resources and help. And if someone is offering to help, try your best to ACCEPT it. There is so much that I would say to someone just learning!!!

What does a typical day look like for Kole?

We get up (depending if we were up all night or not because he can’t tell day and night) but we stick to the routine ALWAYS! Get up, CPT Vest, morning meds and morning routine, go to school, come home from school and typically there are appointments and therapies squeezed in there somewhere, afternoon meds, do our own home routine of therapies, bath time, CPT Vest again, night time meds and night time routine, and then to bed! And Repeat!

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What is your favorite thing about Kole? 

That is a VERY hard question! If I had to narrow it down, it would be his squeezes (hugs) he gives the BEST hugs. It was my goal that I wanted him to know how to give hugs so I always did it and told him “squeeeezee” and he eventually caught on and they are the best! OR his belly laughing that he beyond contagious!”

He is truly a #mirakole

2019-05-22_0002Portraits by Loni Brooke Photography, San Diego County Family Photographer. If you or someone you know would be a great candidate for a complimentary portrait session as part of the More Than a Diagnosis series, please email brooke@lonibrookephotography.com.

2019-05-22_0010Here are a few Behind the Scenes cell phone selfies from our special session on the beach! They even gave me a beautiful gift of one of their #MiraKole beach balls and “Kole’s Wish Krew” tee shirts that they had made for their trip, which I will forever cherish.

The Wells Family – San Marcos Family Photographer

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It’s time for a fall flashback! Fall season for a family photographer is like tax season for an accountant. Things get so busy and keeping up with my blog was something that was put on the back burner while I was making sure that everyone got their portraits in time for their holiday cards and gifts. But, some of my very favorite sessions happened this fall and I didn’t want to miss the chance to share them with all of you.

One of my very favorite sessions this fall was with the Wells Family in San Marcos, CA. Their little ones, Gavin and Solana stole my heart! It was so fun to see their connection. Even at only 5 months old (at the time, it was apparent that Solana really admires and looks up to her older brother and Gavin just loves to make her smile. I had a great time capturing this adorable family playing together and enjoying each other’s company. I am really looking forward to seeing them all again soon when little Solana turns one!

Here are some highlights from our session! Enjoy!

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Fall Family Photos in North County San Diego – The Gallups

 

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I always have a great time with the Gallup family! How could I not? I was lucky enough to do miss Kailei’s senior pictures a couple of months ago, and now the entire family joined in for their holiday photos. They are so fun and energetic, and they are so stylish too! They definitely win my top award for best dressed family session to date! They do so well with coordinating without being too matchy matchy. Every last detail in the styling is right on point, all the way down to their amazing shoes. I am so green with envy over those boots that their daughters are wearing! I always have so much fun with this family and feel more like I am just hanging out with friends during their sessions. I am looking forward to capturing their family photos again in the future.

Here’s a little peek at their session:

 

A Fall Photo Session in San Marcos, CA – The Baumgart Family

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There are certain moments as a photographer that completely take my breath away. I feel the emotion of the moment, click my shutter, and know that emotion will be captured forever. THIS was one of those moments. All of the stars aligned. The location, the family, the light, and the connection – it all came together to create a photograph that will be one of my favorites of all time. Thank you so much to the Baumgart family for giving me this moment. Every time I see this photo, I feel that connection between this beautiful mother and her child, it makes me feel the connection that I have with my children, and it brings tears to my eyes.

Little Sierra just turned one and she is quite the charmer. My husband came along to assist me with sessions that day, and she had him wrapped around her little finger. She was throwing him all of her smiles and even blowing kisses. It was such a joy to create memories with this beautiful family. I am so looking forward to creating memories with them for years to come.

Here are a few of my favorites from their session:

 

 

San Diego County Family Photographer – The Petree Pups

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Pets make everything more fun, including family photos! When Nicole mentioned including their pups in their family photos, I jumped at the chance. I had such a great time chasing them around and capturing them in their element. Nicole and Kale adopted Trapper and Bud as a bonded pair less than a year ago. Bonded pair is right! These two dogs are inseparable and so adorable. I loved watching them be on the look out for bunnies and other dogs. I also loved all of the natural smiles and laughs we captured during the couple’s photos because Trapper and Bud were barking up a storm. I’m so glad that I met this wonderful family and I am looking forward to seeing them next time. Here are a few of my favorites from their session.

 

Rotten to the Core – San Diego County Photographer

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This is my all time favorite session ever! My daughter has become slightly obsessed with the Disney Descendants movies (ok, ok… so have I. I catch myself singing “What’s my Name” and “Rotten to the Core” more often than I care to admit). She begged me to let her be Evie for Halloween (this is the character that is the evil queen’s daughter). When her cute friend Kamren decided to be Mal (Malificent’s daughter) for Halloween, I had an idea. Kam’s mom Brianna is a make up artist (@beautybybreezy_) and I am a photographer. Why not go ALL OUT and do a Descendants themed shoot of them in their costumes?

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I wanted a location that would look like the Isle of the Lost from the movies. We searched for hours and found the best locations with graffiti murals by Zane Kingcade right here in Escondido.

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We played our favorite songs from the movies to help the girls get into character. We all had so much fun and I couldn’t be happier with how the photos turned out! When I was 6, I would have flipped out if I had professional make up and a photo shoot as my favorite character. I hope that I will be winning some mom awards in my daughter’s eyes.

 

More than a Diagnosis – Spina Bifida Awareness Month – San Diego County Portrait Photography

I had the wonderful opportunity to photograph the most beautiful mother and daughter duo. This was a very special session that was near and dear to my heart. Amanda and Alianna are two of the strongest people that I know. Their journey with spina bifida is one that truly motivates and inspires me. I wanted to give Amanda the opportunity to share their story during Spina Bifida Awareness Month (October) with the hope that it will touch the hearts of those that truly need it the most.

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“I found out Alianna had spina bifida a week after my 20 week routine anatomy scan. They told me she was a girl, but they didn’t tell me she has SB. They called me a few days later to go in to get more pictures taken. That’s when I had a gut feeling I knew something might be wrong. The doctor came in and said, “there’s something wrong with your baby, she has spina bifida.” I’ll never forget those words because they are the only words I heard while she was in that room. I couldn’t stop crying and I didn’t even know what exactly spina bifida was yet! I just knew it was something that was going to rock our worlds.

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They gave me three options, surgery on her spine after she’s born, surgery while I was still pregnant, or abortion. I had till 24 weeks to decide. I felt selfish to bring a child into this world with a life long disability. I also felt unqualified as a mother. I didn’t think that I could handle my daughter going through therapies, medical treatments, doctor appointments and surprise surgeries for her entire life. I had all these thoughts on my plate and decisions to make at 19 years old. But, I knew right away that I didn’t want to abort her, because she was kicking her legs in the ultrasound. I believe that was her telling me to give her a chance at life!!

We went home to google spina bifida. It was a horrible mistake until I came across a  picture of a beautiful little girl with long blond hair and a beautiful scar on her lower back. The caption said, “60-90% of babies are aborted with SB, who would want a child with a scar on their back?”. It was obviously sarcastic. But, I believe that was God saying that Alianna was going to be beautiful and that she’s still going to be my daughter and be absolutely amazing and just have a scar on her back too. I felt there that we could handle anything that came our way!

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I researched the fetal surgery, and saw the amazing results from the study. 80% more likely to not need a shunt, and I believe 20-40% more likely to not need any sort of help when walking (like a walker, crutches or braces). I will never know how the surgery benefited Alianna and her quality of life, but I just knew in my heart I wanted to do anything and everything in my power to give her the best chance at life! The 3 hour long surgery was scary, but as I rolled in the operating room, I felt God’s unexplainable peace fall over me and into my heart. I knew things were going to be ok.

A risk to having the fetal surgery was possibly going into preterm labor. My water broke early at 31 weeks but I was able to stay pregnant on strict hospital bed rest until 34 weeks pregnant! I gave birth to Alianna Isabel July 6th 2011 at 10:02 am! She only needed to stay in the NICU to gain weight for 12 days. She was absolutely PERFECT and beautiful… with just a cute little healing scar on her back.

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She was carefully monitored for her mild hydrocephalus and we thought we avoided a shunt since we passed the 1 year mark of not needing one. But, at 14 months she needed to have an ETV surgery where instead of placing a shunt, they drilled a hole to drain the fluid buildup into her third ventricle. So far we have not needed any revisions or had any scares when it comes to her brain!

When she was almost 3 years old she lost function in her left foot, so we needed to have tethered cord surgery. She needed a revision, a second surgery less than a week later since the first incision kept leaking. After that, she stayed laying on her tummy for three weeks but I was able to pick her up and hold her for the first time on Mother’s Day. It was the best present if you ask me! Ever since then, we have been so gracefully lucky to not need any surgeries! Praise Jesus!

She does need assistance walking and wears cute little pink braces with dragons and fairies on them. She also needs help using the bathroom via catheter and cone enema. It was scary to me at first thinking that I needed to do this for her, but we adapted, learned and rose to the challenge. It really isn’t that hard once you get used to it and she now is learning to catheterize herself! Soon she will be able to head to the regular bathrooms at school and just keep a small tube of a lipgloss sized looking catheter in her pocket so no one will ever really know she empties her bladder differently.

The doctors initially told me she might not ever be able to walk and would need to be in a wheelchair her whole life. But, today she loves to swim by herself, rock climb, do gymnastics, climb monkey bars and trees. She loves and appreciates life and I do not regret my decision to do anything I could to make sure that my daughter has the best life possible given her circumstances. I never treat her like she can’t do anything, I let her try for herself. I have always tried to make sure she was as independent as possible at an early age, despite the desire to keep her in bubble wrap and do everything for her. This has all helped her self confidence and she walks around not letting her disability hold her back.

To wrap this up, My favorite story of Alianna is a few years ago watching her when she was trying to get her shoes on her foot. She is not able to point her feet down, only up, so she wasn’t able to get her shoe on. But instead of being frustrated like me or most people would have been, she was laughing the whole time. That’s when I knew in my heart that my daughter has spina bifida, but spina bifida does NOT HAVE HER.

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