Sara Mann is no stranger to the center stage. As an accomplished musician, songwriter and Broadway performer, she has taken her rightful place in that arena on a number of occasions. When she and her husband, Alex, learned they were pregnant with twins, they were overjoyed to learn two new stars would soon be making their big debut. What they didn’t know at the time was that a disease they had never heard of, autosomal recessive polycystic kidney disease (ARPKD), would steal the spotlight from what would have otherwise been the happiest day of their lives.
In 2010 Sara was working as a backup singer for Miley Cyrus and the current star of the hit NBC series SMASH, Katherine McPhee. She was living her dream as a musician in Hollywood with a track record of success in the music business and had just learned she and her husband were expecting twins.
“I’ll admit when I found out I was having two babies I was terrified. I mean, you’re talking to a girl who has been on a diet since she hit puberty. Of course, I was also afraid of the normal ‘I’m having twins’ stuff. Like, ‘How can we afford this,’ ‘How do I hold two at once,’ ‘How can I love two,’ ‘How am I going to breastfeed two’ etc. All of that quickly disappeared though when I started to feel them move around inside of me.”
But her fears were quickly recaptured by what she attributes to a mother’s intuition.
“Only one of them moved inside of me. The other one was very still. Once in a while he would twist a little and turn- but for the most part he was still and I knew something didn’t seem right.”
Her doctor reassured her that everything was normal and they chalked it up to the lack of space available to multiples in the womb. For the next several months, Sara had what she describes as a textbook pregnancy. She continued joining artists on stage while preparing for her next big gig – a first-time mom to twins.
In between tour bus rides and sound checks, Sara and Alex did all the things soon-to-be parents do.
“We had finished the nursery. We had two cribs, red and blue bumpers, boy and girl clothes all neatly folded away in their drawers. Rows of blue blankets and pink spit up cloths. The car seats were in the car, the huge double stroller was put together and sitting in our living room. We had two swings, two bouncy chairs, and two babies. We were ready to do this.”
And then everything changed in the blink of an eye.
At her 36 week ultrasound, the perinatologist noticed one of the twins, her baby boy, had enlarged kidneys. Having no idea what this meant for them, Sara didn’t panic at first. Then, an emergency c-section was ordered and a diagnosis of a disease they had never heard of was made, autosomal recessive polycystic kidney disease (ARPKD).
“What normally would be a sigh of relief (Thank God they are taking these heavy creatures out of me!) turned into a flood of tears and Google searches. We didn’t know if he was going to live or die when he came out.”
The next morning, the twins, Ruby and Myles, were born. While Ruby rested peacefully next to her mother, more than 20 doctors and nurses fought to help little Myles pull through. Several hours later Sara and Alex were given the news they feared most and went to say goodbye to their son.
“Alex and I passed him back and forth as he opened his eyes a few times, squeezed a finger and went in and out of consciousness. We whispered sweet words to him. Telling him how strong he was and how much we loved him and that we’d meet him in heaven one day. He took his last little breath somewhere around 4 a.m. It was the longest and worst night of my life.”
Nearly a year later, Sara and Alex have a healthy little girl and the memory of their sweet baby boy to carry with them.
As a musician, Sara has the opportunity to channel powerful emotions into her work and really capture the essence of what a song means and how people are moved by the lyrics. When she thought about how her work relates to what she has been through, she knew she wanted to do something big to honor her experience and pay tribute to her son’s life and his memory.
“It has been difficult for me to sing since we lost Myles. I would try and sing lullabies to Ruby and tears would just start streaming down my face. Even looking at her alone in her crib brought back memories of her twin.”
In early 2012, Sara began working on a lullaby album which is now available on iTunes. The album is an exceptional selection of songs infused with her spellbinding vocals., a mother’s endless love and support for the PKD Foundation’s mission. Through her partnership with the PKD Foundation, she hopes to raise awareness about ARPKD and bring comfort to the families who have been affected by it.
“Making this record seemed like a cathartic and healthy thing to do, to get me singing again and help me heal. Hopefully, it can help other parents as well just knowing I am singing from the same heart as theirs.”
We are pleased to introduce our new friend Sara Mann to the PKD Community. Her story is proof that on the road to healing, a mother’s love carries on for Myles.
“Lullabies” is now available for download on iTunes. All proceeds benefit the PKD Foundation and its mission to find treatments and a cure for this devastating disease.
For more information on Sara, visit her website saramann.net.