By Emily Rowden
Mommy to Malcolm “Mac”
Mitochondrial Disease
Aug 29, 2021 – March 2, 2022
We lost our daughter, Alice Ada, to stillbirth at 28 weeks in September of 2020. Malcolm (Mac) was our planned rainbow baby. Many families will understand the expectations of a rainbow baby. Their life and potential bring so much joy, comfort, and healing to a broken heart. Mac was never meant to replace Alice, but he was a vessel for the love we had for her as well.
At 9 weeks old, Mac contracted RSV and was hospitalized for observation. We were transferred to a larger hospital when he wasn’t getting better quite like we hoped. It was there that it was discovered that Malcolm had severe hypertrophic cardiomyopathy (HCM). It was recognized that Mac would need more help very soon and he was transferred by flight to St. Louis Children’s Hospital.
Not long after we arrived, Mac was sedated and intubated with a breathing tube. He remained intubated for 7 days while we waited for the results of genetic testing to tell us what caused Mac’s HCM. The cause of the HCM was what would determine our course of treatment which we understood would be medication and/or transplant.
Malcolm finally began to do better and the breathing tube was removed (eventfully). Shortly after the relief of seeing our son breathing on his own, the results of the genetic testing were back. I was sat down in a room with several providers who explained to me that Mac had a mitochondrial mutation. They explained to me that his specific mutation, MIPEP, has only been documented 10 other times and the prognosis was very poor, especially in those with cardiac conditions. Malcom would not be a candidate for transplant because every cell in his body was effected, meaning he would continue to have other organ systems fail, especially those that use the most energy. They explained that I could expect neurological deficits as well as the cardiac defects. They described the way others are effected by mitochondrial disease: seizures, global delays, difficulty gaining weight, difficulty overcoming viruses or infections, GI complications, muscle weakness, and death.
I walked away in disbelief and denial and returned to Mac’s hospital room to hold him. We would eventually be discharged and referred to mitochondrial care in Philadelphia. We took our baby home and did everything we could to take care of him. Things were different than they were before he had RSV; we had medications around the clock. He had medications for his heart, a mix of vitamins for his mitochondrial disease, and twice a day shots for a blood clot. He had a feeding tube because he wouldn’t eat on his own anymore. He was underweight and vomiting all the time. Mac was notably uncomfortable and upset every day and, of course, could not explain to me what he was feeling. I lived in fear and denial from the moment we received his diagnosis.
We remained in denial of his prognosis while we spent every day trying to keep him alive. On Valentine’s Day of 2022 we were headed to St. Louis to fly to Philadelphia for our long-awaited mitochondrial appointment. We went straight to SLCH ER on arrival, Mac was having a hard time breathing. Despite the stable echo that we had less than a week earlier, a new one showed that he had a massive pericardial effusion pressing on his heart and lungs. His vitals would change without any notice and become a life-or-death situation. Malcolm was again intubated and had a drain placed to get all of this fluid off of his heart. We were told that, once that pressure was off his heart, his breathing tube could be removed. However, Mac had increased weakening of his trachea and was never able to be removed from his breathing tube successfully. On March 2, 2022, in the garden at sunset, we held Mac while he took his last breaths.
My family is living life after loss one step at a time. I hope for a cure for mitochondrial disease. I personally have been enjoying raising awareness and funds for mitochondrial disease.
OAW was a painless and perfect way to memorialize Mac. I would hesitate to take pictures of him myself at times because it felt like I was supporting the idea that he would only be here a very short amount of time. Every time I took a picture, a dark voice in the back of my head told me “you believe he’s going to die.” I rejected those thoughts and anything that prompted them. I’ve spent so much time recently reflecting on the absolutely WILD things my mind went through during those times. Glad to be a little more grounded these days.
But, it’s not just pictures. The memories OAW captures are irreplaceable and such a gift financially and logistically when it comes to planning for occasions such as photos during a loss. They have also continued to find ways to support us after our losses. The grief recovery program OAW offers definitely helped me navigate and connect with my feelings regarding my grief. It also helped me disassociate my negative coping mechanisms with the real feelings of love and longing for my children.
Not only is the impact of the images huge, but the love and relationships that continue through OAW after your session(s) will blow you away. We’re so thankful.
