Losing a Child to Sepsis: a Mother Turns Grief into Art

April 21, 2019

Alyssia Aguilar, The Lofty Mom, pediatric sepsis, In honor of Pediatric Sepsis Week, Sepsis Alliance partnered with Alyssia Aguilar to create “Bug”, a cartoon ladybug who will be featured in a series of illustrations aimed to educate children and parents about infection prevention. Infection prevention is key to preventing sepsis in children and, as a mother, Alyssia is no stranger to those dangers. On July 7, 2017, Alyssia gave birth prematurely to beautiful twins at 25 weeks. Unfortunately, twin Mark Anthony II fell ill on July 23, 2017, and passed away from sepsis that developed due to an infection he contracted while he was in the Neonatal Intensive Care Unit (NICU).

Devastated, Alyssia turned to art as a way to express her grief. She reached out to Sepsis Alliance to look for ways to help. “I truly hope that my art will help teach and also spread smiles to young faces and families that are learning about sepsis,” Alyssia explains. “I wanted to find a way to remember my son’s name and honor his life by giving back. This was the perfect opportunity to do that.”

We had the pleasure of chatting with Alyssia about what it was like to have a baby in the NICU and what inspired her to give back. Read the interview below.

Tell us about your baby’s story. What caused Mark Anthony II to develop sepsis as a newborn? What was it like to have your baby in the Neonatal Intensive Care Unit (NICU)?

Alyssia: We were so excited to find out that we were pregnant and were SHOCKED to learn that it was twins. On July 7, 2017, we had to go into labor at 25 weeks gestation. We had been fighting pre-labor since, 19 weeks’ gestation. I was just having a lot of contractions and after tons of medications, we weren’t able to prevent them from coming. We were scared and didn’t know what our journey would be for them coming so early. They were both considered micro-preemies due to their weight and size. Our NICU stay was a constant roller coaster ride. Every day there would be highs and lows. The twins were both side by side in the same room and we were so proud to see them fighting.

We called in the morning of July 23, 2017, and they gave us some bad news. Mark Anthony had fallen ill overnight and was still not looking very well. We rushed to the hospital to be by his side. His fight came to an end that day, and he went to be with all the other angels in Heaven. It was after that they explained that an infection occurred from moisture, which could have come from tubing or really anything. Because the infection grew in his body, sepsis was then the ultimate condition that took over and took his life. Being a micro-preemie, he had a lot against him and needed more time for development. His body wasn’t able to withstand the infections and all the medications that were trying to help him. He fought hard and we will always be proud of every day he was with us.

How has the loss of Mark Anthony II affected you and your family?

Alyssia: Mark Anthony left a huge impact on our lives. Mark and I were devastated and didn’t understand “why”. Of course, grief is a process for us to wrap our minds around and continually journey through. For those who have lost a twin, you still have another to care for and love. However, the twin that passed will never be forgotten and is always in your thoughts when you see their twin sibling growing and thriving. We never wanted our girls to see our pain or feel our presence around them sad. We chose to be strong around them, and wait for our alone time at night to truly release our hurt together and pick each other up. This is when we both started to find ways to turn our grief into outlets of creativity and hopefully inspire others but more importantly to remember our son.

You are involved in spreading awareness as well as supporting different organizations. What prompted you to give back?

Alyssia: Our loss inspired us. We saw so many families in and out of the NICU and we were opened up to a world that isn’t known unless you have personally gone through it. Being a creative person, I love to express myself through art. I would create tons of artwork for the twins’ bedside. I noticed though not all babies had colorful art around them. I wanted to brighten everyone’s spot in the NICU, but also bring some excitement to the parents who were coming daily. I started to create small artworks and would leave them at the front desk. The art would have characters, scriptures, quotes of encouragement, and just bright colors. I wanted families to be able to choose what they wanted for their child and to hopefully feel inspired by decorating their child’s space. I decided to do this simply because the NICU is a ride you don’t know what to expect. So, having something made for you to actually choose and decorate with was an exciting and out of routine thing to do. I wanted to inspire these parents and bring some color to these little one’s bedsides, even if they weren’t for my own.

You have collaborated with us for Pediatric Sepsis Week by creating the cartoon ladybug named Bug, and a series of illustrations featuring Bug to educate kids and parents about infection prevention. What impact do you hope this will have?

Alyssia: I am so excited that I was able to partner up with you all. It meant a lot to find an organization that is not only trying to teach others about sepsis but also honor those who have passed and survived! I truly hope that my art will help teach and also spread smiles to young faces and families that are learning about sepsis. I also hope to share our story of loss and survival of sepsis. I wanted to find a way to remember my son’s name and honor his life by giving back. This was the perfect opportunity to do that.

Do you have any advice for other parents who are going through a similar experience as you and your family have?

Alyssia: My advice to any parents who have gone through loss is to continue your child’s story. Find ways to remember their life, and honor them by doing things that you can be proud to commemorate them by. I would also say to encourage your spouse and always find ways to come together through the hard times. God has played a huge role in our lives, and I am grateful for his grace over us. We are far from perfect, but we choose to try our best daily and that’s all that you can do sometimes.

Is there anything else you would like to share?

Alyssia: I have a blog called: The Lofty Mom. It is a website that shares our story, but also gives resources to families who have gone thru loss or the NICU. I hope to also continue sharing small projects where people can help me give back. The website is: www.theloftymom.com

This photo was taken in 2018 on the first Mother’s Day after Mark Anthony’s passing. The bear in the photo was with him in the NICU when he passed. Pictured in the photo, from left to right, is Alyssia, Mark’s twin Selena, Mark’s dad Mark, and his older sister Emma.