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"Family Receives Support Before and After Loss of Child"

Melissa and Michael H. suffered the greatest loss imaginable when their 7-year-old daughter, Michaela, passed away.

Michaela spent her brief life in and out of hospitals, including Mercy Children's Hospital. There, her family received care and support from Maternal-Child/Pediatric Palliative Care (MaCPaC), a program that provides family centered, supportive healthcare to infants and children who suffer from life-limiting illnesses.

“I don’t know what we would have done without their compassion and guidance,” Melissa said. “Michaela was born with multicystic encephalomacia, which basically means that cysts formed on her brain while I was pregnant with her. She was delivered via an emergency c-section when her heart-rate kept dropping. She only weighed four pounds and was not breathing. She went to St. V’s, where she received care from Dr. Cameron, among others.”

Melissa said Michaela “did OK” for much of her first year, but she developed hydrocephalus – fluid on the brain – when she was about 10 months old.

“She had surgery to install a shunt, but things continued to go down hill from there,” Melissa said. “She had about five or six shunt revisions over the next two years, and a lot of complications and neurological problems led to other problems. She hung in there though, and did many things her doctors thought she never would, but then she regressed. In the end, we don’t know what caused it, but she started bleeding in her stomach, and no one was able to stop it. We finally decided to take her home. At this point, our final hospitalization had actually been at Mott Children’s Hospital at U of M, but we had begun working with Dr. (Pam) Oatis, Dr. (Kelley) Shultz and Beth (McBurney White, MSN, CNS, MaCPaC Program Coordinator) prior to that, so when we were getting ready to leave Mott, I called Beth.”

As they prepared for the final days of their daughter’s life, Melissa and Michael involved Beth and the other compassionate professionals affiliated with MaCPaC as part of Michaela’s care team.

“Dr. Oatis, Dr. Shultz and Beth helped us work through the difficult questions,” Melissa said. “We had a lot of tough decisions to make about when to stop treatment and how far to go to keep her alive. They broke everything down for us into little steps, helping us make a series of small decisions that then made the answers to the bigger questions manageable. They explained what happens to someone when they are dying. They gave a real-life perspective that was very different from what you see in the media.”

Throughout the entire last year of Michaela’s life, Beth and Drs. Oatis and Shultz acted as advocates for Melissa and her husband, Michael.

“They helped us understand the news from the doctors,” Melissa said. “We knew we could trust them to be honest with us and not to ‘sugar coat’ anything. They also made clear to the doctors what we did and didn’t want done for Michaela. They understood that we knew our daughter better than anyone, and they made sure our voices were heard. The three of them together were extraordinarily compassionate and very easy to talk to.”

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