Supporting Maleila and her Family

**UPDATE**

Friends, Family and Community, 

We wanted to take this time to share some updates on Maleila, and the ups and downs of her tough and resilient journey.  As many of you know, Maleila Rosalia-Nena was born with Hypoplastic Left Heart Syndrome, which means that the left side of her heart isn't developed. Because Maleila was not pre-diagnosed with HLHS prior to birth, her journey is unique and more complex.  Maleila had several health traumas prior to her first (of several required) open heart surgeries, and this has made her healing journey a long one.  Because she is so medically fragile, she has had permanent residency in the Cardiac Intensive Care Unit at Children's Hospital in Seattle.  Over the months, she has had many different procedures and care plans - including a surgery to fix a mal rotation in her stomach and a feeding tube, and another heart surgery.  Last week,on Friday June 10th, Maleila had her 3rd heart surgery. The 12+ hour surgery on bypass was hard on her kidneys (which struggle already), and they had to leave her chest open for a few days due to bleeding during the operation. They were able to close her chest on Monday, June 13th, and Maleila is currently on a ventilator to allow her body to rest as it heals.  

Needless to say - the journey of this little fighter has been a roller coaster.  Kelsey, Maleila's mama, left her teaching career and has lived at the hospital alongside her every day for these last 6 months.  The emotional toll on the family has been huge, but their faith and their community have kept them strong.  They are incredibly grateful for the support of Maleila's amazing care team, and the incredible doctors who continue to help Maleila fight her fight.  While Maleila’s heart disease has no cure, each surgery gives her the chance to live a beautiful life. To her family, Maleila is a miracle and teaches them every day about love and strength and hope.  She loves watching her mobile, staring at mama, weekly visits from Dad and big brother Mateo, and Finding Nemo. She loves her rocking chair, and she loves her cuddles with mama.  

The team at Children's Hospital is hopeful that Maleila and Kelsey will be able to return home in the fall, but it is still unknown (with possible more surgeries prior to release) due to the big recovery ahead.  She will continue to have health challenges throughout her life, some of which can be mediated through therapy and others that will be forever a part of who she is.  She will need another open heart surgery down the road, with still the possibility of needing a heart transplant.  She will be developmentally delayed, and a lot of the long term effects for Maleila are not yet known, but she will require full time care and support from her family for many years.  As Maleila is recovering from this current surgery, and as Albby and Mateo are navigating having Kelsey and Maleila far away for so long, we want to gather in community around them.  Whether through donations, or prayer or encouragement . . . . please consider sending this sweet family the love and hope they need to make it through these next few months.  Thanks for being part of Maleila and her family's healing journey.  

 

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Original Go Fund Me Message:


Maleila Rosalia-Nena Gonzalez was born on December 30, 2021, making Mateo a big brother and bringing so much joy to parents Kelsey and Albby. Just a few days later, the family was given the hardest news of their life – Maleila was diagnosed with a rare heart defect called Hypoplastic Left Heart Syndrome (HLHS), which means that the left side of her heart didn’t form or develop. She was airlifted from Skagit to Seattle Children’s, where she began to fight for her life. Most of the time, this syndrome is detected before birth, and babies are able to immediately receive the care they need. But Maleila’s heart condition slipped through the cracks, and the family was completely blindsided.

 

Because the doctors didn’t know this for several days, Maleila’s small body experienced a lot of trauma. Her body had a huge healing journey just to get healthy enough to be approved for the first of three open heart surgeries that she would need to survive. After several weeks of being in the CICU (Cardiac Intensive Care Unit) on a ventilator, and after tons of prayer, the doctors said that a miracle happened and she was strong enough for surgery. At 1 month old, Maleila made it through her first open heart surgery, and her next two surgeries will be between the ages of 4-6 months, and then 2-6 years (these surgeries are dependent upon her size and the growth of her body and heart). For children with HLHS, there is also the chance of needing a heart transplant in the future.

 

Needless to say, Maleila’s first month in this world has been incredibly hard on her and her family. Maleila and Kelsey will continue to be at children’s for the next 4-5 weeks as she recovers from this first surgery (this time frame could be longer, depending on how healthy and strong she is able to get). Even after this surgery, she is still high risk and each day is filled with huge health battles and tough conversations. The healing journey facing Maleila is a hard one, and the journey facing her family alongside her is a long one.

 

 

Financial support at this time would help ease the burden of missing work. Even in between hospital stays and numerous appointments, caring for Maleila will be a full-time job. Support will help with long stays in Seattle, commutes up and down I-5 and the big medical bills that are soon to come.  It will help buy the remedios and tools that Maleila needs to be using at home to help strengthen her body and brain.  Financial help will also allow Kelsey and Albby to be present with their baby girl. It will give them the deep breaths and mental health they need and deserve so they can focus on being there for Maleila and Mateo.

 

Kelsey and Albby believe in the power of prayer. They believe that everyone’s prayers are what helped give Maleila her miracle of strength to reach her first surgery. To Kelsey and Albby, Maleila is a miracle blessing, and the strongest fighter they know. They are so grateful for all of the prayers, love and positivity they have received so far. Continued prayers or donations of any size, no matter how small, mean more to the family than they can express.  

 

Thank you everyone, for considering supporting Maleila’s family during this time.