“The meaning of life is to find your gift. The purpose of life is to give it away.” - Pablo Picasso
If you know a family that has a child under one year old with a life-altering illness, birth defect, or injury, lives within 30 miles of downtown Austin, TX, and would treasure professional portraits of their precious baby and family, please nominate them by filling out this form.
Baby Maya the Heart Warrior Princess
Baby Maya is July’s spokesmodel for the JDP Warrior Portrait program. Like my previous little warriors, Maya is a Heart Warrior Princess. After months of rescheduling we were finally able to hold the session at Maya’s home. So now it’s time to shine the spotlight on this little cutie and hear about her journey so far.
Maya’s Story (by Maya’s Mom)
Before Maya was born I had three other near perfect pregnancies and deliveries. When my fourth came about, I naively expected the same. The pregnancy was the hardest pregnancy I had, and the sickest. When I went in for my twenty week scan I noticed it was taking a very long time, and I was being asked so many questions. Before I knew it I was seeing a specialist each week due to multiple heart defects being seen. It would later be a huge surprise just exactly what kind they were outside the womb. With each ultrasound she gained a few grams, but there was no real adequate growth. She was what is called an IUGR Baby which stands for Intrauterine growth restriction . I was then told that induction was likely and a possible NICU stay. August 2018 came, and It was time for my induction. There seemed to be little progression, and after some time her status became unclear. An emergency c-section was then deemed necessary. I don't remember the majority of her delivery other than wishing my husband was there, that someone was there. While he stepped out to give our other children a break from the hospital room, his wife and baby were being put in an operating room. After a lot of pulling and tugging, Maya entered the world! I was able to give her a kiss on the forehead and then she vanished, and was off getting care.
I ended up having a placenta abruption during her delivery, and needed a blood transfusion. She had a lot of blood in her lungs due to this. At sometime during the transfusion I began to feel my throat close up, and the rest is unclear. None of this mattered because she was okay, we were okay. At some point I woke up to my little family, and would be able to meet my new baby in the NICU. Day after day passed and it just was not clear as to what my baby needed. All we knew is that she had a respiration rate of 90-100+, but yet she was always at ease or "comfortably tachypneic (to breath fast)". A normal rate would of been 30-60 . One day our neonatologist came in to talk with us, he found out the answer. She had been diagnosed with several conditions including an ASD (Atrial Septal Defect), and Scimitar Syndrome also called Pulmonary Venolobar Syndrome or Hypogenetic Lung Syndrome. Scimitar is very rare and can present itself in different ways. There are many elements to it: dextrocardia (the heart is shifted to the right side), pulmonary hypertension, and PAPVR (partial anomalous pulmonary venous return). Maya has a hypoplastic or sequestered right lung which means it's underdeveloped and not receiving blood normally. Maya would spend exactly one month in the NICU at St David' s North, and then be transported to Dell Children's NICU to continue the care that they were more equipped to handle. She left St David's on the day she turned one month old. She was placed in the PICU so that she could get her first heart catheterization. While she stayed in the NICU she received surgery for a gastrostomy tube to help with her feeding difficulties. This is has been a lifesaver literally and figuratively.
She currently works with speech therapy and physical therapy to help her get stronger and back on track as far as development and learning to feed orally. After leaving the NICU, she'd return to Dell on several occasions due to respiratory infections. She'd receive another heart catheterization as well. Fast forward to today, she is doing great. Even though we know heart surgery is in the future at some point; we are just cherishing the fact that she is home and is her version of healthy.
How has this affected your family?
We are just trying our best to adapt to our new normal: making appointments, giving meds, handling oxygen, caring for her feeding tube etc. It's amazing how quickly you adjust! Caleb and I have been married for 10 years in May. We thought we had gone through trying times before, but nothing would ever compare to this or even prepare us for this. I am in awe of his strength daily and that of our other children. We often feel alone as we don't have any family and friends nearby. Even so, I think we still do a pretty good job!
What advice would you like to give to families experience the same or similar circumstances?
Being that Maya's condition is very rare, if someone is going through similar get as much information as you can via books, medical journals, online searches, social media groups etc. I am still trying to understand her condition, and that's okay. This is not my field, and medicine may not be your field! Never feel bad about getting a second opinion. Also, advocate like nobody's business. You know your child better than anyone else. It may seem intimidating to do at times, but you are still mom and/or dad.
What advice would you like to give readers who know a family with a warrior/warrior princess baby? (What can they do to help? )
Just be there in anyway possible. Showing up for someone in some way is the best way to alleviate stress. If I had someone that could of been there or could be here when things get rough it'd make a world of difference. Offer the family meals, babysitting for siblings, or even just support and encouragement.
It's almost impossible to show enough gratification for someone that has helped your child live. Yet I would like to attempt to: Thank you to St David's, Texas Childrens- Austin, and Dell Childrens! Thank you so much Dr. Su, Dr. Stokes, Dr Holt, Dr. Stromberg, Dr Meyer, Dr. McCoy, Dr. Adusumalli, Dr A. Garcia, Dr. Hodges, Dr Liu, NP Murray. Nurses : Danielle, Haley, Joe, Melody, Seth, Roxy, Lourdes. To therapists Kaitlyn and Molly. A huge thanks to the team at Dell's comprehensive care clinic in general! The 7 months that she has been on this Earth have been one giant blur, so I have obviously forgotten a lot of very notable names , but I just know that they will always be in my heart and have had a huge part in Maya's Journey and successes thus far.
Never forget that a warrior child of any kind is still a child. All children are worthy of love and celebration just like our Maya.
Help families like Maya’s by donating to Ronald McDonald House Charities.