Share your story to help bring awareness for CAH and we will send a special gift for sharing!
To share your story send an email to loraengel@westynslight.com. Please have 250 words or less and include City, State, Country and a picture of the one with CAH.
My name is Waylon King Engel. I was born November 25, 2020 and I am Westyn’s little brother. Although I’ve never met Westyn, I am told we would have been great friends. I was diagnosed with SWCAH at birth but my 1st test was not definitive so further testing was required.
I enjoy my big sisters, attention, food, cars and making everyone smile.
Lisbon, WI
Maddox “Big Mac” Nolen was born on December 18th, 2019. He went into Adrenal Crisis on 12/25/2019. Our local hospital sent us home stating that he had Acid Reflux and to follow up the next morning with his Pediatrician. We wound up calling an ambulance and we went to our closest Children’s hospital.
Maddox had been seizing, vomiting bile, and was having heart arrhythmias. We were told that he would most likely not survive. Everything happened so quickly and it’s still such a blur. I watched on as a team worked on my tiny boy trying so hard to save his life.
Within an hour of hearing to expect the worst the doctor told us he believed they knew what was wrong and that Maddox would have to have an extended stay, but he would survive.
We spent almost two months with him in the hospital and our family living across the street at the Ronald McDonald House.
Maddox is now 2 1/2 years old. He was diagnosed with Salt Wasting Congenital Adrenal Hyperplasia and also Hypoglycemia.
He has had blood sugar scares and crisis’ along the way, but – all in all – he is thriving. Life is not always easy, it gets scary, and the worry is always there, but we are doing the best we can to ensure that he has the best life.
Temple, GA
This is Autumn age 4 (she will be 5 June 12th). She was diagnosed with SWCAH. They was actually able to find out she had CAH before birth due to ambiguous genitalia showing up in my ultra sound about 28 weeks along. We have had a bumpy road on the way but we are handling things so much better since birth. My girl loves playing with cars and trucks and loves spending time with her family!!!
Lexington, KY
My husband and I have 3.5 year old twin boys who do not have CAH. When they were 2.5, we decided we wanted to have one more baby. Our baby Clay was born 1/15/20, and we felt truly blessed to have 3 happy, healthy boys.
Clay was born on a Wednesday, and we were discharged from the hospital on Saturday morning. We were just settling into becoming a family of 5, when I got a phone call Saturday evening (the call they say you will never get) saying Clay tested positive for a newborn screen, and that we had to rush him to children’s hospital as his condition was life threatening. I have never prayed harder for a false positive test result in my life, but test after test and symptom after symptom, his diagnosis was confirmed.
These past 4 months have been a great learning experience, and we are thankful for wonderful Drs and newborn screens, but I am still very fearful of what is to come, and hope through awareness and medical advancements, this disease gets easier to manage and hopefully a cure is found.
Kristen Stromberg • White Bear Township, MN
My son, Iason has salt wasting CAH. My fiancé and I didn’t know we were carriers. Because my daughter (first) was fine. After my son was born and a week old he was latheragic and not wanting to nurse. That’s when I got a call from ANMC saying to go into the pediatric clinic right away with my son. I was so scared because he wasn’t waking up and they escorted us to the ER right away after telling me the findings from the PKU newborn screening. I cried so hard because he was so little and nurses were surrounding him trying to start an IV.
After a few days with IV hydrocortisone my son got more responsive and then a week later he got discharge with hydrocortisone, fludrocortisone and sodium pills. He was doing fine taking the hydrocortisone and fludrocortisone crushed with breast milk. But he didn’t like the sodium tablet with breast milk. He would cry and still drink it though. He didn’t have to take the sodium tablets after he turned 4 months. Because he started baby food and I would put extra table salt into his food. Now his 3 1/2 and doing fine, but does crave salty snacks. We decided to have another baby knowing the chances. But his baby brother didn’t inherit CAH. Iason does go to speech therapy and is making good progress.
Iris Lovan • Anchorage, Alaska
I’m 28 from England I was diagnosed with CAH at 9 years old. Always told I would struggle to conceive without help. I met my husband in 2010 I Shockingly fell pregnant naturally 3 times. They tested my husband and found him to be a carrier. So as soon as my children arrived they was Taken to neo natal and tested. All 3 of them have non classic CAH. I felt I had failed and it was all my fault they had it knowing what they had to go through and what they had ahead of them.
Now their 8 6 and 5 years old their doing amazing no treatment as of yet monitored every 4-6 months with endro still my youngest has had a few bumps been hospitalised with low glucose. So now he’s monitored for that as I’m a diabetic I no the signs which is handy. He also has a steroid plan in place at the local hospital incase of emergency. He’s also got ADHD and Learning difficulties and can be very challenging. he won’t let the doctors perform the short synacthen test so at the moment they was doing a plan on how to get that test.
Mrs Emma Hill • Walsall, England
Chrissy was diagnosed with Classic CAH shortly after birth. We never heard of CAH when the hospital staff told us the diagnosis. We were very concerned for our son’s future and challenged that we could not make a mistake giving him medicationthree times a day every 8 hours for his entire life. We soon learned how to advocate for our son and express his medical needs to his doctors and hospital staff.
This journey with CAH has not been easy but we are doing it. CAH has a way of making a family feel isolated because many medical professionals do not understand what CAH patients need. The first two years challenged us in many ways that forever changed us, and our faith was developed. Chrissy is now five years old and in kindergarten. We are thankful everyday for the miracles we recieved. We are thankful for our miracle baby.
Chris and Jenny Lua. • Fairfield California, USA
Willow’s CAH journey has had many ups and down’s. She was born and rushed to the nearest Children’s NICU due to very low blood sugar that dropped to dangerous levels. Once she had a diagnosis we treated it and she improved. They sent us home scared and unsure what our future looked like. Along the way we have navigated our way through our new normal of medication and monitoring. She has had 3 life saving injections at home due to illness. We don’t let the condition control our life.
We go on adventures it just takes some planning. We advocate always for her condition. There have been many stays in the hospital…many medical professionals are not familiar with treatment for CAH. It is a complex condition when they are sick. We educate ourselves so we can educate others.
Willow, Kansas City Missouri, USA
Our story started shortly after my daughter was born, I thought I had just delivered a healthy baby. A few hours after birth the doctor came in holding my baby and said we have a problem my heart sunk as I was wondering what the problem could possibly be I was not expecting what came next. The doctor told me she had no idea what was wrong and needed a second opinion. Soon enough more and more doctors flooded our room all with puzzled looks on their faces.
Then the news came we think it might be congenital adrenal hyperplasia. What in the world is that I asked, no one could give me an answer. They said she needs to be on the next flight to Quebec City hospital witch was 7 hours away from our home. Within minutes she was taken out of my arms and put on a plane with her father as I was not allowed on the plane due to heavy bleeding.
As I’m getting ready to discharge myself from the hospital so I can travel to get to my daughter the last thing the doctors tell me is if she doesn’t get there in time she will die. Imagine driving 7 hours wondering if she will be alive by the time you get there. Thankfully she was. We spent 2 weeks in that hospital and doctors worked tirelessly trying to figure out what was wrong, we were in a big hospital and only 1 doctor had one other case in her years of CAH no one else knew what it was.
Fast forward 2 weeks we got the diagnosis and started treatment right away. Then I heard the words I had been longing to hear you daughter will be ok. How I prayed for those words. We finally got to bring her home. Here we are almost 4 years later and she’s doing great I am thankful for each and everyday I spend with her. We also had no idea my husband and I were even carriers.
This is Darcie our second child, we also have a two year old named Edward.
Before Darcie was born I had never heard of CAH and getting her diagnosis was an emotional whirlwind. Darcie has the salt wasting type of CAH. She is now 5 months old and is a happy, thriving cheeky little soul. When she was first born Darcie was born with ambiguous genitalia, I remember being told they wouldn’t be able to confirm whether she was a boy or a girl without many tests and this broke my heart, I feel we were very lucky as Darcies condition was picked up from birth and she didn’t slip into crisis which I have learnt is quite common from others situations.
I remember being told that Darcie would live a normal life with the help of medication but the idea of anything being life threatening was terrifying. Whilst Darcies medication was being sorted we had a rough journey, we had two hospital stays due to her levels being all over the place, Darcie then had a temperature of 38 which caused her to be in hospital for another week, they could not understand why this was her second temperature so young there was no explanation. We had Darcie home for a couple of weeks before she caught bronchiolitis and needed a hospital stay again whilst being sedated and placed on oxygen.
We’d been through this with our son previously but it was still very scary when any illness is life threatening. Today I feel like I’m still learning every day but feel confident that I know my child, I saw your post on Facebook this morning and you touched my heart, I’m thankful you sharing your story but it’s also very scary. Thank you for making awareness for our precious children.
Town near Brighton in the United Kingdom
My son, Steven, was diagnosed with salt wasting CAH at 10 days old, we almost lost him. He lived a normal life with a few hospital stays but did everything his friends did.
He was sick twice. I was driving him to the hospital when he collapsed. It rang 999 and took them 40 minutes. I tried CPR, mouth to mouth but he was pronounced dead at 9:10am Monday, April 12, 2010. They had classified it as a non-emergency.
United kingdom
I can’t recall the last time; if ever that a CAH story has brought me or my husband to tears the way Westin’s has. You see, July 13, 2018 our son Peyton also went into an adrenal crisis in the early morning. I woke up to him screaming in pain, but would quickly fall out of it. I tried to wake him up when I noticed he was clammy and lethargic. I would pick him up and his limp body would just give until he would go into another screaming spell. I knew right away what I had to do. My husband and I gave him an injection and loaded him up as I called 911 to meet up with us since we live so far out of the way. We drove about 10 minutes or so until we met up with the ambulance which at this point he still hadn’t come to. We get him in the ambulance and it seemed as if they were taking their time, but time may have stayed still in my head for all I had known. I knew that my baby wasn’t doing so good and that something was wrong. I told the paramedic that he should have “woken up by now” and “I’ll give another injection if I have to”. After several excruciating minutes she finally decided to check his blood sugar. His blood sugar was 22. As soon as they gave him the glucose, he was up and being silly less than 2 minutes later. And within a few hours, although wore out, he was back to normal.
So many times we were asked if he was sick before or after the crisis and he never was; and we never found the cause for the random crisis. I believe it was due to the hydrocortisone that he was taken at the time. The manufacturer is known for having more fillers in their medicine than others.
My son is 3 years old now and has gotten use to taking his medicine everyday now. I think he might actually enjoy it. We give it to him in pill form and he takes it like that. People are always so amazed how easily he takes it. Then they ask questions and its my way of helping spread awareness about CAH as they say to me “how normal he looks”.
He was diagnosed around 3-5 weeks old which is a whole other story in itself. He has Simple Viralizing CAH.
Peyton doesn’t let anything stop him, yes he is terrified of needles and sometimes of bugs too, but his bold and outgoing personality makes it fun as we deal with this life-threatening condition.
Stacie, Jacob, Avia and Peyton Faciane. • Abbeville, Louisiana