Emma Marissa Munguia

Once upon a time there lived a littlest warrior princess! Her name was EMMA MARISSA MUNGUIA. Do you believe in miracles? I promise you, she was one! Let me tell you about her journey! To say that emma was rare is an understatement. Emma was undoubtedly one of a kind. She was born premature on February 9, 2016 in Anaheim California, 3lbs 8oz & had the sweetest kitty cat cry. Since pregnancy we spent most of her journey in the hospital. She had 11 specialists, that's right ELEVEN! Countless doctor appointments , an impressive list of surgeries, ongoing lab work and imaging. Emma came into this world with a whole lot of instructions. Her life was not easy but it was definitely worthwhile. My pregnancy of her consisted of countless ultrasounds, NST appointments, and scary words like, "fatal", "no cure", "we don't know why this is happening". No one had answers despite all the genetic testing I underwent. We decided to take a chance and hold on tight to our faith. At first the diagnosis was trisomy 13, then trisomy 18, then holoprocencephaly, then Acardi syndrome. Go ahead, look them up, I promise you when you find out more about those diagnosis your heart will ache too. It wasn't until Emma was born that we underwent whole exome sequencing genetic testing that we came to discover she had DPH1 gene mutation. Turns out her dad and I both carry the exact same gene mutation and we both passed the bad copy on to her. Crazy right! We will always have a 1 out of 4 chance of conceiving a child with this disorder. Ever heard of it? Probably not because she was 1 of 1% in the world! ONE OF A KIND! you will not find any information about DPH1, not even in the medical journals. At least not yet, but soon her genetics doctor MD. Trevor Hoffman, will have the honor to write about her condition in the medical journal. Who can say their child is in a medical journal? It's remarkable! She really set the bar high for her siblings. From the time she was in my womb we knew that she would have major organ failure and we slowly were given all her underlying diagnosis. You see DPH1 affected, her brain, her eyes and eyesight, her facial features, her lungs, her heart, her kidneys, her hands, her overall development. We were told at each prenatal appointment that she would not survive her birth. We refused to let that be true! The underlying conditions she had were Partial agenesis of the corpus callosoum, complex pan-craniosynostosis, microcephalus, coloboma on the right eye, bilateral cleft lip and pallet, chronic lung disease, chronic kidney disease (stage 2 mild), chronic heart failure, both sides hearing loss, diabetes Insipidus, severe developmental delay, and clenched hands. Her electrolytes were constantly monitored for hypernatremia and hypokalemia. Try saying all that in one breath! I know what you're thinking, how in the world did this child survive! Do you believe in miracles now? You should! Additionally, Emma was ventilator dependent, oxygen dependent, had a tracheotomy, had a gastrostomy tube placed , depended on a feeding pump and underwent a fundoplication because she had problems with feeding. She had hearing aids and splints sh had to wear. She had a PDA- ligation surgery, craniosynostosis repair x2, and was monitored at home with a pulse oximitor. Try putting all that equipment in a diaper bag. I was literally pushing a stroller that looked like a portable ICU when I took her to her appointments and laboratory. Needless to say she was on several medications. She had multiple x-rays, echo's, MRI's, CT scans, EKG's, renal ultrasounds, endless appointments, numerous hospital stays and Emergency room visits. She required weekly occupational therapy and physical therapy. She also had a few surgeries left on her list. At every hospital stay she continued to defeat the odds. She had all the doctors constantly puzzled. She was rare! She was unique! She was a miracle! She was a warrior! On November 14, 2017 at just 21 months old, she went with the Lord. She had bacteria growing in her blood called pneumococcus. How did it get there? No one could really answer that. Pneumococcus took my daughter's life. She was in an unusual state of septic shock for over 7 days. Not heard of with sepsis! She was fighting so hard to stay here on earth with me, her mommy. I pushed and begged for all the adequate treatments but nothing was working. Her kidneys took the biggest hit. They began dialysis and starting it was not easy. She was a very difficult stick and on top of that she was 4kilos fluid overloaded. We were lucky they were able to get any lines on her. Her heart and lungs were also suffering the consequences of the septic shock. She began having seizures. After the first seizure, I looked at her , my baby was gone! Her eyes were blank, not moving. Her soul was no longer there. The machines were forcing her organs to continue to work but she was gone! With a knot in my throat, tears in my eyes, heart ache in my soul and fear of the reality, I , along side her dad, made the decision to disconnect her. We knew she gave it her all. We knew it was the right thing to do. Slowly they began disconnecting her machines and wires. I wanted her in my arms, I wanted to hold her so tightly and kiss her before we said goodbye. At 20:20 that day, my sweet innocent baby girl took her last breath in my arms. The PICU team and CHOC staff was amazing at making her last moments special for us. I will never find the words to repay them. We were family! We were Emma's Team! Alongside with her Kaiser team of specialists who helped me and taught me to care for her at home. Emma was blessed to have so many incredible doctors! I will never forget them. They will always hold a special place in my heart. Together we helped my baby have 21 months of life. A life that was not promised to me. I life that I was so blessed to witness. A life that changed me forever! We want our daughter's legacy to continue. We want to give hope to others and raise awareness of DPH1. We want to give her a proper memorial and burial. We want it to be as amazing and beautiful as she was. Tomorrow is never promised, the present is a gift and the past is full of joyful memories. I hope you let my daughter and her memory into your heart and that you find inspiration in her journey to live! Help us continue her legacy! #EmmaMarissaJourney Thank you! -Sincerely Karina & Gabriel Munguia