Rare × 2 = ? What having twins with a rare condition teaches you about people
When one of Megan’s twin daughters was diagnosed with familial cerebral cavernous malformations and faced brain surgery, family and friends rallied around. Yet, when the other twin was diagnosed, they faded away, leaving the family to carry their burden alone. It felt like no one cared. Megan fears this is a common experience for families with twins affected by rare disease
By Megan Loden
Diagnosis with a rare genetic condition
The year was 2020. The world was turned upside down and things were looking a bit uncertain for most everyone in the world in one way or another. I was settling into my new working mom life after taking many years to be at home with my children, then 12, 16 and 16. Yep. I have twins. Identical girls. What a ride that’s been!
We had a nice, quiet life. My girls were doing well in school and were involved in cheerleading. They had a good group of friends who didn’t make me cringe every day with their teenaged drama and disrespect. We had certainly settled into middle-class suburbia.
Junior year came around for them and we decided to send them to hybrid school. Two days in person, three days online. They started this in October of 2020 and their second day in person was 15 October 2020. It was about 9am when I received a phone call from the school that would change our lives forever. Twin B had a seizure in class and the ambulance and fire department were on the way.
This launched us into a new world. The rare world. And they’re identical twins. So rare × 2!
Familial cerebral cavernous malformations was Twin B’s official diagnosis. A very kind paediatric neurosurgeon named David Shafron from Phoenix Children’s Hospital in Phoenix, Arizona gave us this life-altering diagnosis and told me to get her twin into an MRI machine sooner rather than later as this condition is a part of her DNA. The DNA she shares with her twin. He wrote down notes of important things, including his phone number and we were off to the races.
Twin B’s surgery
Twin B was booked in for a craniotomy on 15 December 2020, to be performed by Dr Michael Lawton, assisted by Dr Shafron. This operation to remove bleeding lesions from her brain would be the first and likely not the last time she would see the operating room at Barrow Neurological Institute. When I called her school to explain that she would be missing class for at least that week I was met with an overwhelming flurry of questions and concern for my daughter and our family from the receptionist, vice principal and teachers.
I grappled with the terror in people’s voices when I told them what was happening. I felt the panic rise up in me as people, whether close to me or far removed, told me they would be too scared to go through with it if it were their child. How unfair it was that this was our only option. I started to slowly isolate from many people around me as I just couldn’t take their feelings on as my own. I needed to be strong for my girl.
In the days leading up to her surgery we had a somewhat surprising frenzy of well-wishers. Mostly family but also both my and my husband’s employers and co-workers. Flowers were delivered and care packages were left on our doorsteps. The phone calls were nearly constant.
The morning of surgery came and we got ourselves up and ready to go. We woke up her twin and my husband quietly made the coffee. When it was time to go, I brought her brother downstairs to say bye to us and we headed into the night. Up until that moment, that was the hardest moment of my life. It took every ounce of strength I had to get into that car and drive to the hospital. Every part of me wanted to just keep driving on the interstate highway and not stop until we had run away from seizures, meds and bleeding brain lesions.
Post-surgery. people called to check in. They sent bagel baskets and cards. More flowers and stuffed animals. It was a revolving door. This was through COVID, so no one came over. Plus, brain surgery, so no overstimulation allowed!
Recovery was slow but steady with lots of therapies. Three a week for a few weeks and then it dwindled down over the next three months. It was during that time that we finally got the results of Twin A’s scans. She had the same number of lesions in her brain and (of course) one of them was bleeding. It was big and a repeat offender, according to the neurosurgeon at Barrow.
So, it seemed we were headed for more of the same. But this time was different. As much as people said the “wrong thing” during Twin B’s surgery and recovery, at least they said something.
Twin A’s surgery
Twin A went to surgery on 4 March 2021 (less than three months after her sister’s) and came out with little more than a high five and a text from a friend or two. She had one friend send flowers and a bear to the hospital room. I remind her constantly to cherish that friend and she has become an honorary part of our family. Aside from that, no cards, flowers or well-wishers. There was no basket from the cheerleading team, no flowers from my husband’s employer. Family that had sent things for Twin B had all but disappeared for Twin A. It seemed that the people in our lives were decidedly over it and would no longer offer to help, even if only out of obligation.
Now, I’m a mother. I’m prone to being a bit overprotective when it comes to people hurting my babies’ feelings. I know this about myself. So, I kept as quiet as I could. Believe me, I understand how unbelievable and uncomfortable this all is for those around us. This isn’t happening in a vacuum and the emotional toll is heavy and far-reaching. When people say they meant to send something or check in but got busy I excuse it. I tell them I understand, but how could I? How could I understand that you got so busy you forgot our second child in three months was having brain surgery? How? Mostly, I excuse it for myself because, to be honest, I just can’t allow myself to feel the disappointment and anger that’s always lingering just beneath the surface.
Not only did my daughter face brain surgery at 16 years old and a rare genetic disease with no cure and surgery the only treatment, but she did it while thinking no one cared. If I focus on that for longer than a fleeting moment, it’s too much to bear. This mama heart simply cannot take it.
This second surgery was a rude awakening. I see who showed up for her. Almost no one, if you’re keeping score. As much as I try not to, I can’t help it. I am keeping score. The lack of compassion for my child makes me incredibly sad and angry. It makes me want to scream at the world and never stop. And I don’t.
“I fall apart every so often, alone in the dark and then I move forward and go about the business of fighting for my children. I look for moments of peace and joy in the midst of grief and anger. I have to.“
Doing better for families struggling with rare × 2
So what’s the point of this? Well, my dear friends in Rare, the point is that my family isn’t the only one struggling with rare × 2. There are many of us. The emotional, financial and physical toll is more than most people can comprehend. And I know from my own personal connections in rare that our experience is often the rule, not the exception.
We have to do better for these kids, for these families. We have to show them that if they’re forced to walk through it, we can at least lighten their load from time to time with a text, card, flowers, a meal or a drop by. Don’t we owe it to these families we see as “so strong”? We’re not strong. We’re surviving.
Megan is a mom to twins—identical 18-year-old girls—and a 14-year-old son. She, her husband and kids live just outside of Phoenix. She is a writer, caregiver and mom. Maybe most importantly, Megan is also an advocate for rare diseases and rare disease caregiving. She feeds her soul with her career and works at ANGEL AID CARES uplifting other caregivers. She is currently the chair to the Arizona Angioma Community Alliance and treasurer of the HOD Association in her “free” time. Follow her on Facebook or Instagram, or check out her website meganloden.com