In Memory of Milayna: Support for Her Family

On August 14th, 2024, at 2:16 pm, we welcomed my granddaughter, Milayna Monica Meyers, into the world. Born to mother, Mina Meyers, and father, Michael Meyers. It was the happiest day of our lives. Lives that were forever changed for the better. She was perfect, with her auburn-toned hair and beautiful blue eyes. The joy a child can bring can never be measured. And that joy was felt by every one of Milayna's family members that day.

Unfortunately, within a few days after the delivery, the joy turned to concern. Milayna began to exhibit what appeared to be seizures. EEGs confirmed our fears, and Milayna was transferred to Children's Hospital at Froedtert where further tests needed to be performed.

It took genetic testing to reveal the underlying causes for the seizures and why they were difficult to keep under control. Milayna was born with a very rare genetic condition. A condition so rare it doesn't even have a name. It's referred to as KCNQ2-DEE. Persons born with this condition will be prone to daily seizures and developmental setbacks.

After a few weeks of EEGs and medication tweaking, it appeared that the doctors had found the correct balance of medications to keep the seizures at bay. Milayna was discharged from the hospital on September 9th. Mina and Mike were excited to bring their beautiful baby girl home.

Over the course of the following weeks, Milayna began to thrive. She was growing and developing perfectly. She was reaching every developmental milestone and showed no signs of seizures. No signs of physical, cognitive, or intellectual setbacks. She appeared to be a perfectly happy and healthy baby. And her family became more at ease and hopeful about her condition and what her childhood would look like. Milayna had a very happy childhood ahead of her and a family that couldn't get enough of her.

After coming home from the hospital, Milayna's personality really began to shine. She loved watching football with her daddy. She loved it when daddy gave her baths. She loved chest-to-chest time and early morning chats with mommy. She loved to stare at her Gammy's sparkling earrings. She would start her mornings out with nothing but smiles. She thought everything was funny. She loved being tickled. She loved being held facing forward and walked around so she could see everything the world had to offer. And she loved to snuggle and be snuggled.

On October 10th, I went over to my daughter's for a visit with Milayna. We spent that morning doing things like tummy time to work her core, chest-to-chest for snuggles, some Baby Einstein videos, which she loved, and of course, some tickles which brought out the biggest heart-melting smiles and laughs. It's truly a magical feeling a grandchild brings into a grandparent's heart. A feeling no words can describe. A feeling money cannot buy. A feeling that can never be replaced.

Afternoon was approaching, and it was time to feed Milayna. As with most babies, Milayna began to doze off towards the end of her feeding. She was becoming "milk drunk" as I love to call it. I laid her down for her nap around 12:45. Thirty or so minutes had passed when her mother found her blue, unresponsive, and without a pulse. Milayna's mother quickly called 911 as I frantically performed CPR on my lifeless granddaughter. First responders were on the scene in less than 5 minutes. Unfortunately, it would take an additional 15 to 20 minutes before Milayna's heartbeat was restored.

Milayna was then taken to the ER where efforts to stabilize her continued. Due to the lack of oxygen, Milayna began to seize. The doctors struggled to get the seizures under control. After a few hours, the doctors felt Milayna was stable enough to be transferred to the Children's Hospital at Froedtert. The hospital she was just discharged from almost a month to the date prior.

Upon her arrival at the hospital, Milayna underwent a CT scan to see if any swelling had begun. The swelling was minimal at that point but expected to worsen and peak within 3 to 5 days. She was hooked up to a ventilator, EEG, and neuro-protective measures began. The EEG was showing very little brain wave activity. All we could do was wait to see what the next few days would bring for our precious angel.

Milayna's eyes opened the following morning. For a split second, my heart sprang but a second later, it sank. I couldn't see my smush (nickname for Milayna) behind those eyes. She just wasn't there. She began to suffer more seizures which is not uncommon with TBI (Traumatic Brain Injury). Seizures were now going to be an even bigger concern for Milayna in addition to the potential brain damage.

Day 3 had approached, and the brain swelling had begun. She had another CT scan to confirm the swelling. Unfortunately, there's nothing to be done for brain swelling other than wait and hope. Hope the swelling doesn't cause more damage and hope the swelling doesn't cause brain death. An MRI was performed on the 4th day. We sat down with the neurologist and a slew of doctors to discuss the MRI results. We were praying for a miracle, but our prayers went unanswered. The MRI results revealed severe to profound damage to almost every part of Milayna's brain with the brainstem suffering the least amount of damage. Milayna was diagnosed with spastic quadriplegic cerebral palsy with an increased chance of seizures and infantile spasms. Infantile spasms are fatal. The doctors were not optimistic about Milayna's future quality of life.

In the case of Milayna, her lungs seemed to trigger breaths just fine. The doctors were concerned about her airway. Her ability to control secretions, swallow, cough, and of course, breathe. The only way to find out if Milayna still maintained these abilities was to take her off of the ventilator.

The day she was taken off of the ventilator she was also baptized. Her hospital room was packed with family to bear witness to our beautiful angel's baptism. Amidst the tragedy, some joy. The transition from a ventilator to natural breathing is not an easy one. Even for people who haven't sustained TBI. There's a lot of secretions which should trigger coughing if one's airway functions properly. It became apparent that Milayna's airway was not functioning as it should. The damage to her brain had impaired her ability to control the airway. She could still breathe, but it took everything she had, every muscle in her body, to take those breaths.

Milayna was mighty. Milayna was strong. Milayna was a fighter from the day she was born. But as the days went on, Milayna became tired. It was too much work for her to breathe. Milayna also fell into something called a neuro brain storm. She couldn't control her upper extremities, and her arms were in a constant state of motion. She was exhausted but couldn't sleep. Milayna would not be able to survive without constant life-sustaining measures.

On the afternoon of October 22nd, comfort measures for Milayna began (morphine, Ativan). The doctors didn't think it would take long for Milayna to be at peace. The nurses had taken off/out all the tubes, tape, cords, and IVs. We could finally see that beautiful angel's face again. The following hours were spent with us holding Milayna. Sharing all the precious moments we had with her. The medications had taken away all her pain and fear. As she was being held, we could hear her sighing and cooing in relief. She sounded like Milayna again. Happy. By 7 pm that evening, Milayna had passed peacefully in the warm embrace of her loving parents' arms.

No parent should ever have to bury their child. It's by far the most painful and unnatural tragedy anyone can ever suffer. May we support Milayna's parents and family with our prayers as they begin the painful journey of healing from this loss.

Thank you,

Monica Blumenberg

(Gammy)

Miss you already, my little smush. Can't wait to hold you again.