Briley Mae Reiland’s Story
Coping with a Neonatal Marfan Syndrome Diagnosis, Benita Gallagher’s Personal Story
My name is Benita Gallagher, and I’m here today to tell the story of my daughter Briley Reiland. Briley was born at 36 weeks on July 28,2018 at Fairview Hospital. Immediately after birth, she was diagnosed with Neonatal Marfan Syndrome. Marfan itself is very rare – it presents in only 1 in 5,000 people. Of those diagnosed with Marfan, 75% inherit the genetic condition from one or both parents. The other 25% present with a completely new mutation of the disease. Her dad and I both tested negative for the disease, so our Briley presented with an entirely new mutation of the disorder. This happens once for every 20,000 births, so it’s very, very rare.
About Marfan Syndrome and Neonatal Marfan Syndrome
Marfan is a connective tissue disorder that varies in severity. On the lower end of the spectrum, it’s widely theorized that Abraham Lincoln had the syndrome because of his extremely tall stature and very long arms. However, symptoms of the disease vary widely and present differently in every case. They can present in the skeletal system (people tend to be taller with very long fingers & toes, longer limbs, frequently have scoliosis, and sometimes joint pain to name a few), eyes (lens discoloration), heart (poor circulation, cold extremities, and in severe cases, mitral and aortic valve issues), lungs (sleep apnea and other more serious lung conditions are common), and nervous system (spinal issues and pain, sometimes severe). Neonatal Marfan syndrome is the term most doctors use to describe a child who presents severe cardiovascular symptoms and acute Marfan traits very early in infancy. It progresses much more quickly. most seriously related to the heart, lungs, and airways. Briley happens to have a severe case and almost every single symptom.
I’m writing this because I wanted other people to hear our story. Everyone handles life’s challenges differently. I want any of you who have struggled with something similar to know that you’re not alone.
Before, I start about my daughter Briley. let me introduce myself. I’m 27 years old. I was born in Cambridge, Ohio. I grew up in a very small town called Quaker City and went to the same school for my entire life. I was born with perfect hearing and lost a lot of it from the chicken pox. I do not know sign language but have learned to read lips. I’ve worked successfully for most of my life. My parents divorced when I was two years old and I grew up with my grandparents. My mother made me learn to mow the grass when I was in 3rd grade. My Grandma taught me how to make meals and cook. My grandpa taught me to save money. I moved to Cleveland on my 25th birthday and currently live in Brookpark. Prior to Briley’s birth, I worked at Hillcrest Hospital.
I got pregnant in December of 2018. I was excited yet nervous all at the same time because my pregnancy was not planned. When Briley was at 12 weeks gestation, I had my first ultrasound and had all the blood work done for genetic pre-screening. Everything was negative and looking great. She had a strong heartbeat. I did not want to know what I was having because I did not care! All I wanted was a healthy child, but, dad (Gregory) was so excited. He REALLY wanted a little girl. So, the deal was at my 20 week ultrasound appointment, if it was a girl, her name was going to be Briley Mae Reiland.
My appointment came and the ultrasound technician did her thing and told us we were having a GIRL! Dad and I were very BLESSED! Then she said “I’m going to go get the specialist.” That is NOT what you want to hear – I was scared. He came in, did his thing, and said “I’m going to have you repeat blood work for Down syndrome 18.” When I told him that I had all that done at 12 weeks, he said that he was seeing a cyst on Briley’s brain, and that is normally caused by a genetic mutation. He wasn’t overly concerned because this is something he sees frequently, so realistically it could have been anything. However, he also said that the four chambers of the heart didn’t seem to be working properly and that she wasn’t opening her hands. So, I did the blood work and it came back negative again.
I had another check up 4 weeks later. The cyst was gone and her heart looked great! She still wasn’t opening her hands, but at the time we chalked that up to babies being stubborn. The specialist saw me one final time 6 weeks later. I was 7.5 months pregnant everything was still looking great – she was measuring ahead and they cleared me to go back to my regular OB/GYN (Dr. Karth in Lakewood). She was absolutely amazing and so supportive! I could not wait to see Briley!
Briley’s Birth and Diagnosis
I was in my last month of pregnancy, and at 36 weeks I went to my first weekly appointment. She told me I was 2cm dilated and 70% effaced – she gave me two weeks if that. She went to listen to Briley’s heartbeat and my belly rose out of nowhere. Dr. Karth put me on the monitor just to make sure everything was okay, and everything was fine. Apparently I was having contractions and not knowing it. I went to work the next day, and that night at 2am my water broke at home. Boy was I nervous and so excited! Gregory took me to Fairview Hospital. I walked up to child birth center with my shoes and pants soaking wet! I was 3cm and immediately thought “this is going to be a very long labor.” I got a room, but I was determined to get this done without an epidural. I was not laying in bed til Briley was born. No way!! I walked, took a hot shower, did squats on an exercise ball. I went from 4 to 8 cm in 5 minutes. The doctor tried to get me to lay down, but I was comfortable on my left side and I stayed on my left side. Briley was born Saturday July 28,2018 at 11:38 am weighing in at 6 pounds 9oz and head full of beautiful black hair. But she was not crying. They put her on my chest. I was shaking and asking is she okay? Why isn’t she breathing? Next thing I knew, off to NICU she went.
Later that day a very nice gentleman doctor came in to explain what was going on. He told us that Briley was diagnosed with Marfan syndrome because she had long fingers, long feet, and both valves of her heart were moderately leaking. I was so scared and crying. My biggest fear was her heart problem. The doctor wanted to send Briley to downtown main campus NICU but, he realized how I felt and because this was our first baby he didn’t want to separate us. When I got discharged, Briley got transferred to main campus. She was there for two weeks then went to the rehab center in Shaker Heights for another 2.5 weeks. At the rehab center, her dad and I got training for the NG tube and the medications she had to take.
Briley was home for exactly ten days. We took her back to the hospital because she had to work so hard to breathe. Her chest seemed caved in and she started vomiting and changing colors. They did an echo and off to PICU she went. When the doctors got her heart under control again, she was sent to regular floor. Then, on September 24,2018, Briley was screaming. Her monitor looked good, her heartbeat was a little fast but her respiratory vitals looked good. However, I noticed that SHE didn’t look good! Briley was pale as a dead white person! I ran to get the nurse and cardiologist they initially brushed me off, saying her vitals looked fine. I was insistent and made them LOOK at her. Shortly after that, she went into cardiac arrest and didn’t recover well. At this point, Briley was VERY ILL. So, back to PICU she went for more extensive testing.
In PICU, Briley’s aortic valve failed entirely. At 8 weeks old, she was heading back to OR for an emergency open heart surgery! I was so scared. They all told us after her surgery that they weren’t expecting Briley to make it. They told us to expect her to come out of surgery in a coma and on life support. My 8 week old daughter proved them all wrong. She came out on oxygen and in an ICU ventilator. I’m telling you I have a fighter! Briley was moving forward in the right direction.
In October, Briley was having trouble breathing again. They tried everything – oxygen, cpap, bipap and nothing was helping. She just wasn’t strong enough, so in November she had another surgery. Her little system needed more support, so this surgery implanted a trach tube and a gtube to help her grow and get stronger. She came through this surgery with flying colors, so the following week she went back to rehab, and on December 18 she came off oxygen completely!
The very next day December 19, she had a fever of 102 and was really working hard to breathe, so back to PICU main campus she went. There she was diagnosed with staphylococcus MSSA – a septic staph infection. It has been one hell of a ride I must say. They successfully treated the infection, but getting that sick really took her recovery back several steps. When I wrote this story, she was in PICU at the Cleveland Clinic main campus.
Briley turned 6 months old on January 28th. I have learned in the past six months that you have to have patience. You also cannot compare your Marfan child to another because every single case is different. Do I get depressed!? Of course I do. But I still get up and go see her every single day. And believe it or not I am still pumping!! I am damn proud of myself for that – it’s the least I can do for my child to continue to make her strong. As long as Briley continues to fight for life, I will continue to be her biggest advocate and give her a loud voice.
Coping with a Neonatal Marfan Syndrome Diagnosis
People ask me every single day “Benita, how on earth do you handle this?” My response is easy – I was given a choice to be a mom, but I wasn’t given a choice to be strong. I just do it. All I can do is continue to be there for Briley, be her voice, and continue praying. I know she has more open heart surgeries in her future, but I have faith that she will be okay and that we are in this together.
The final chapter.
(from the editor)
After a very long, hard battle, Briley’s heart finally gave up. She passed away on Feburary 9th surrounded by family and loved ones. For anyone inspired by Benita’s story wanting to do more or take action, the family asks that you donate in Briley’s name to the Marfan Foundation so her short life can help the lives of others stricken by this disease.
Thank you for giving my Briley a voice and letting me share her story with you all.. I’ll gladly to answer any questions you have for me.
You can follow me on Instagram at @benitagallagher.
For anyone interested in following along with Briley, please join our Facebook group ‘Briley Strong.’ If you’re looking for ways to help , please also join us on March 31st for the Walk for Victory in Cleveland – join our team ‘Briley Strong.’ We’d love to walk with you!
God bless you all!
other meet-a-mom features
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Meet Jennifer Woda from Sing & Swing, music classes for infants and children all over Cleveland’s East Side!