This post was written by Lisa Bocan. Lisa is mom to three beautiful children, one being heart angel Mila Rose. Read about Mila’s story through her mom’s eyes. It is one of loss and hope, anguish and peace, and ultimately — love.
On April 28, 2015, our little family of three was ushered into the ultrasound room to complete a routine anatomy scan at 18 weeks 5 days gestation. Our three-year old Brenna joyfully watched her baby wiggle around on the screen as the tech completed our anatomy scan.
The scan was nearly complete so daddy took a sleepy toddler home and left me to complete the scan. Just a short time after they left for home, I heard the words that forever changed the course of our lives. “I am so sorry, but there is something wrong with your baby’s heart.”
After suffering three miscarriages prior to this pregnancy and then experiencing a textbook pregnancy up to this point, my heart was broken once again. Our precious baby was sick. I immediately grieved the normalcy of a heart healthy baby and through tears and shock I asked the tech, “Is it a boy or a girl?”
“It’s a little girl.” the tech said. I smiled through my tears.
We decided to name our baby girl right away so we could pray by name. At 7 weeks pregnant I had woken up with the name Mila on my mind. It had never been a name on our list for our first daughter nor was it one I had thought of prior to that day. I went home and looked up the name meaning. Mila meant miracle. What a perfect name for our miracle baby.
In an instant, everything changed. I became a parent to a child with CHD. I was now a Heart Mama. We were immediately thrown into a world we never even knew existed, let alone wanted to be a part of.
Mila would be born with half a heart. The official diagnosis was Hypoplastic Left Heart Syndrome with Aortic Atresia and Mitral Atresia caused by Jacobsen Syndrome.
Our textbook pregnancy turned into high risk doctor visits, phone calls to top ranked children’s hospitals and trying to keep some level of normalcy for our three-year old daughter.
On August 22nd, 2015, we relocated our entire family, dogs and all, to Boston, Massachusetts so Mila could receive care at Boston Children’s Hospital immediately following birth.
Mila Rose was born on September 10th, 2015, after induction at 38 weeks 1 day. She came out crying and her coloring was perfect. Her Apgar scores were 8 and 9. She appeared to be perfectly healthy from the outside. After holding her for the fastest 10 minutes of my life they took her away to the NICU with daddy close behind her.
Boston Children’s Hospital became home. For nearly two months our entire family navigated life in Boston. Matt and I traveled between the hospital and our host family where Brenna lived until the decision was made to send Brenna and Daddy back home to regain some normalcy. They packed up the car, we gave hugs and kisses in the parking garage and they traveled the 12 hours back to NC. Again, my heart was broken.
I now had one goal, care for Mila the best I could and pray we could bring her home one day so our whole family could be together once again.
Hospital life was a roller coaster. One minute things were calm. Mila would be peacefully sleeping and I would take a quick break for coffee hour with other heart moms or to get a 15 minute chair massage. But some days I barely left Mila’s bedside for fear she would become too unstable. The emotional, physical and mental load was unbearable some days. Yet, somehow, every day was filled with beauty because I was with Mila. We were in the fight together. I always found my silver lining because of her, even on the hard days.
Mila was a one of a kind. Her sparkly brown eyes talked to you, her coordinated outfits and bows were the talk of the CICU. As were her dislike of diaper changes, her love of being held, her gorgeous lashes and her thick, full head of dark brown curly hair. I especially loved her tiny doll lips and her button nose. Mila was loving and gentle, the sweetest soul. She loved music, having her hair brushed, being read to and holding hands.
Oh, how I wish we could have held her longer. During a routine vitals check at 7pm on February 1st it was discovered that Mila’s pupils were uneven. She had developed a brain bleed. The Neurology Surgery Team was called in for emergency brain surgery but a CT scan revealed the bleed was too severe for intervention. They showed me the scans and I knew our fight was coming to a close.
In shock, I stood over Mila’s bedside. Four and a half months was not enough time. My heart broke again. Our attending doctor phoned Matt in the middle of the night explaining what had happened and by 5am my precious big girl and dear husband were on a plane en route to say our “see you laters” to our littlest princess.
They arrived around noon on February 2nd. We gathered our treasured medical team members and as a family we ushered Mila to heaven. It was the most heartbreaking and beautiful moment I have ever experienced. At 3:49pm on February 2nd she took her final breath. I held her in my arms as Jesus lifted her into His.
I sang over her, trying to fit a lifetime of love into our final hours together. We carried her around the room free of all the tubes and wires and let Brenna hold her baby sister for as long as she wanted to. Peace and love filled room 14 of Boston Children’s Hospital that February 2nd afternoon.
This upcoming February marks 4 years without our Mila. Brenna is now seven years old and we have since added a baby brother, Nolan, to our family. He turned two in November and has brought laughter back into our home. I am so grateful for the gift of children. They are pure joy.
There is not a day that goes by that we don’t mention Mila’s name. She is very much alive in our home and in our hearts. We can’t wait for the day when we will all be reunited once again.
If you’re reading this and you’re a heart mama, hear this, you are loved. Your story matters. Your child is a treasure. You are not alone. No matter what stage you are in the CHD journey, I hope you can be encouraged knowing hope never disappoints. The battle is not easy, especially in grief, but one of my proudest titles is and always will be, Heart Mama.