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For too many kids with HIE, loss in childhood can be an eventual outcome. HIE is incredibly complex, and the parenting journey taking care of children who may have shortened life spans brings unique challenges, with many questions, feelings and decision-making along the way that can feel very isolating.
Justin Yan’s daughter, Mila, was born in March 2015 with HIE. He quickly found Hope for HIE, and got involved in those early years as a Board of Directors member, working on connecting families in meaningful ways. When Mila passed away in January 2023, he graciously shared the path that he and his family traveled as they worked with their complex care and palliative care teams to make decisions with Mila’s overall quality of life always at the center.
We are so grateful to Justin for allowing us to bring his lived experience in this difficult topic to our community, for families who may also be traveling this road to not feel alone, to be connected to resources that can help, and share and honor Mila’s legacy as one filled with immense love, in life and in death, and a Yan family legacy of giving back to help others along the way.
Hey y’all – long time since I’ve been on here. But this community was instrumental in my first couple years with Mila. It helped me climb the learning curve faster and become a better dad and advocate for her because of it. Now that our journey has, to some degree, come to an end (minus the lifelong grieving that will ensue), we wanted to share a bit more about the proceedings of death so that if anyone confronts this situation, they’ll have at least had some exposure because let me tell you, it’s not awesome.
A little backstory: Mila suffered a brain injury at birth. It led to three weeks in the NICU, NG tube –> GJ tube, infantile spasms –> epilepsy, cerebral palsy, pediatric osteoporosis, etc. We had a solid first six years. Lots of doctors visits, ABM, PT, etc. but she was very stable. The keto diet kept her epilepsy at bay, she really seemed to enjoy school, we had a great care team around her, and she wasn’t in the hospital very often. Year seven (her last year), things started to unravel. Respiratory viruses and worsening dystonia lead to constant discomfort. Between those two (and likely other unidentified things), her breathing had worsened and we were in and out of the ER for months.
How Mila passed: Mila was on quite a regiment of medications to calm her system so that she could find peace throughout the day and sleep at the night. From conversations with her doctors, we’ve known that her metabolism was running high and her dosages also needed to be high to keep pace. At some point, her system would break; we just didn’t expect this to happen so soon. Mila stopped breathing at night after we had titrated a new medication the previous morning. I’ve purposefully not shared the names of her medications as I don’t think that’ll be helpful to anyone here and would cause panic more than anything else – all our kids are different and respond uniquely. I honestly don’t think any of us could have predicted that this would’ve been the outcome of a low-dose med change.
The proceedings of death: This is where I’m hopeful people gain some takeaways. A couple months before Mila’s passing, we spent time discussing a DNR for Mila with the Palliative Care team. They sent us the paperwork, we hadn’t yet signed it, but were prepared to sign it and share it with them when we met in the next month. The decision was hard, but it was something that Gracielle and I had been discussing for years and finally felt at peace with, especially as Mila’s quality of life had been deteriorating.
When we found Mila in the morning and we couldn’t get a pulse or a breath, we called 911. Keep in mind, we hadn’t signed the DNR yet but we knew we would. The dispatcher sent their team and he walked us through CPR and chest compressions. It was a terrible feeling having someone who doesn’t know you or your situation, try to talk you through extreme life-saving precautions on the phone when you’ve told them that you don’t believe this is the right thing to do. Then the paramedics arrived and we had to have the same conversation. We had to tell them to wait, to give us a second to talk, for them to assess the situation before they took action. And in that moment, we learned that she likely hadn’t been breathing for a couple of hours and that’s when we then again asked them to not take action. Another terribly sinking feeling. However, the right one because had they taken action, they would’ve likely broken Mila’s ribs (osteoporosis) among other things, leaving her already lifeless body in shambles.
After the paramedics left, the police came to take their report, ask questions, etc. In Washington State, apparently, they also send a chaplain (religious figure) to provide comfort, support, prayer, answer questions. We are not religious, and this was uncomfortable. He seemingly would not leave our home. After the sheriff got a hold of Mila’s doctor and the medical examiner, they determined that Mila did not need to be evaluated by the medical examiner and then released her body to us. At this point, we were to make arrangements with a funeral home to take her until we decided how we wanted to honor her body. This all occurred from 7am until around 10am or so.
In the meantime, we had all of our immediate family at our house and some of Mila’s most precious people – her school nurse and her kinder teacher and paras. All the people who loved her the most. We spent the day together and with Mila. We held her, shared stories, laughed, cried…all the things and feelings. At around 3pm, we made arrangements with a funeral home to have her picked up.
I cannot imagine how the rest of the day would have gone had the paramedics made attempts. Her body would’ve been broken and battered and the peace with which we shared with her that day would’ve been taken from us. I’m not at all saying that this is the only and right decision, but this was the right decision for us.
Thank you. I have deeply appreciated the friends we’ve gained from this community along the way and all the learnings. I hope that this last message from us can help provide some more perspective on the end. Thank you all so much and all the hope and peace to everyone and their kiddos here.
All HIE families are able to utilize Hope for HIE’s comprehensive support services through our licensed Social Worker, Child Life Specialist, and peer support programming to navigate these complex situations, and tap into full family support including coping plan development, connection to local community resources, sibling support, and legacy building and memory making.
In the patient advocacy and support space, there are so many passionate people doing exceptional work that have created resources so many can benefit from. We are pleased to link our community to the Courageous Parents Network, a nonprofit organization that has build out incredible educational resources for families of children with medical complexities that may need to engage in complex decision-making, quality of life optimization, and end of life care.
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