Why my baby’s blindness diagnosis inspired me to keep working and build a business
Editor’s Note: In 2021, Leslie Danford launched her business while pregnant with her fourth child. After failing his newborn hearing test, Danford’s baby was later diagnosed with usher syndrome, Type 1B, a rare genetic condition that affects hearing, balance, and will likely cause vision loss in childhood. While there is no cure for Usher syndrome, many promising therapy treatment studies to have emerged
If there’s one thing I’ve learned about life at 40, it’s that you have no idea what’s coming around the corner. It could be something that will change your life forever.
In early 2020, I lost my dream job in the hospitality industry due to the global pandemic and felt like I had I lost my identity. A few months later, I found out I was pregnant with my fourth child, right in the middle of my newborn business, vitaminsoff Earth.
As it happened, I had no idea what would come next. My pregnancy had been normal and my daughter was born healthy. We were even able to leave the hospital a day early so she could meet her three brothers at her house who were excited to see her!
an unexpected diagnosis
The only surprise was that he failed the newborn hearing screening at the hospital, but since we had three hearing children and no family history of hearing loss, we didn’t care.
The nurse told me for sure that my daughter probably just had fluid in her ears. I noticed that she slept excellently, not at all disturbed by noise in our full house, but I just considered myself lucky.
When we finally completed follow-up testing about two months later, we learned that our beautiful baby girl had severe to profound bilateral sensorineural hearing loss. In other words, she was deaf. My husband and I just couldn’t believe it.
The diagnosis was so unexpected, with no connection to our history or experience, that we couldn’t understand how it could be true. We ordered a second test, with the same results. As part of routine follow-up testing for hearing loss, we sent our daughter’s blood for further genetic testing.
While of course many people live full and happy lives with hearing loss, our family was plunged into a period of mourning. Our daughter would never hear the joyous laughter in our house, the sounds of her siblings playing, or the voices of her parents.
Then we learned about cochlear implant technology, which gives access to sound through a medical implant. For a hearing family of five with one deaf child, this technology was a godsend. After all, our daughter could participate in the sound world of our family life. We also made a commitment to learn sign language as a family, so we would have a way to communicate with our daughter in case she didn’t have her cochlear implants.
After two months of processing the hearing loss diagnosis, we finally feel comfortable with our new way of life. Our family would embrace and include our youngest daughter, with all the tools and support she would need.
‘The worst thing that can happen to a deaf child’
Then came the results of the genetic tests (after almost three months of processing). There was an explanation for our daughter’s hearing loss: she had Usher Syndrome, Type 1B.
People with this condition are born with hearing loss and sometimes vestibular (balance) problems. Worst of all, they will lose their vision over time, starting at the periphery and getting smaller and smaller, until there is nothing left, usually by the age of 10.
It turns out that my husband and I carry the autosomal recessive gene for this condition, meaning there was a 1 in 4 chance that our offspring would have it. Here was our fourth child, with the syndrome.
If you had asked me what is the worst thing that can happen to a deaf child, I would have said it is to take away their vision. We just couldn’t imagine a world that was both silent and dark.
Would she have friends, would she grow up and have a family, would she be able to pursue any occupation she wanted? Right after we got out of the cycle of grieving and accepting the hearing loss diagnosis, we plunged back into it.
There was a period of time where my husband and I cried ourselves to sleep, then woke up and reminisced, and cried again. We told our other children, ages 5, 6 and 8 at the time, but they were too young to really understand. Friends were understanding, but couldn’t relate to what we were going through.
seeing the light
Like many of us when faced with uncertainty, we search the internet. I read all about Usher Syndrome and looked up stories of people living with it.
I soon found out that NBC News’ Chief White House Correspondent, Peter Alexander, has a sister: rebecca alejandro – not just live but thrive, despite having the condition.
Her strength and positivity inspired me to hope, finally. devoured your book and I began to see that having Usher syndrome was not a death sentence. There were so many possibilities despite the challenges of the condition.
We found other families on the same path as ours. The Porcanos, whose daughter was also born with Usher syndrome type 1B, established save view now, a group that raises funds to research a cure. We also partner with the Foundation Fight against Blindness.
We learned about the promising research being done to stop and even reverse vision loss and retinal degeneration associated with ushers. There is so much hope with technologies like CRISPR and gene editing, particularly when you think about a decade time horizon. We begin to see the light.
back to business
Throughout all of this, there was a worry in the back of my mind. Of course, my daughter’s health and our family’s plan to deal with her condition was top priority, but what about Vitamins?
The business was finally taking off, after all the hard work and investment he had put into launching it. If she left him, all of that would be wasted.
When I realized that my daughter would need extensive therapy to learn how to use her cochlear implants, address her vestibular dysfunction, and control her vision loss, not to mention learning sign language, I began to feel desperate.
How could I run my own business on top of all that? If I had to dedicate time to this company, was I being selfish when my daughter and family needed me? I took my foot off the accelerator for a while to think it all over.
Eventually, we found therapists, a sign language teacher, and a deaf culture mentor. We began to establish our support network and regular childcare. As our routines became more established, I could feel the constraints on my time loosening.
I thought about the scenarios: If I quit Vitamins, how would I feel about it in a few years? If I could keep working on it, is it something I regret?
I went back to one of the driving motivations that I have leaned on as a working mom throughout my career. Spending time on something outside of the family doesn’t mean you’re selfish or taking something away from them. It also means that you are a role model and are setting an example of what hard work can do when you invest in your future.
Given my daughter’s diagnosis, this became even more meaningful to me. I didn’t want him to see me give up on challenges. I wanted her to see that with the right support, more hard work, and perseverance, she could pursue her dreams, even in the face of what seemed like impossible odds. I decided that as long as my family’s needs were met, I would continue to build my business.
I realized that nine months ago, and it’s amazing how far we’ve come. Our family has a basic working knowledge of American Sign Language and our daughter, now 15 months old, does some signing.
His cochlear implants are active and he is processing and reacting to sound. We have raised funds to support critical research toward several promising milestones in the mission to save vision for this community.
At the same time, Vitaminis has just launched its second productwith more growth planned for 2023. While we have a formidable journey ahead of us, I like to think that on the tough days we focus on gratitude, the progress we’ve made so far, and the horizon ahead.
I want my daughter to know that no matter what challenges life throws at her, she can dream big, chase those dreams, and build her life with those she loves cheering her on.