The Tiniest Baby Warrior, Madx || Austin, TX Newborn Photography
Sharing the love for a surprise baby born with Hydranencephaly and Diabetes Insipidus.
Have you ever watched the show I Didn’t Know I Was Pregnant on TLC? Well now you get to see the JDP spin off. According to WebMD, 1 in 2,500 women do not know they are pregnant until they give birth. This is 3 times more common than a woman giving birth to triplets. And this is how baby Madx made his entrance into the world.
Madx’s mom contacted me inquiring about a newborn session and a Now I Lay Me Down to Sleep session. For those that don’t know, I volunteer for this service that does remembrance portraiture for parents experiencing the death of a child. So as you can imagine, I was a little confused. After a few messages back and forth it was clear that I wanted to do a newborn session to celebrate Madx’s life. He has very serious medical issues and is currently home on hospice care, but he is fighting like crazy. So I wanted to document this little guy’s strength and the love of his family. He wasn’t so keen on posing for photos, but I still think we got beautiful portraits for his family to cherish forever. This little guy definitely stole my heart! 💙
Please consider making a donation to this young family. They have a difficult road ahead of them. Contact me directly for physical donations (diapers, wipes, formula, etc). Or make a contribution to their GoFundMe page.
Madx’s Story (as told by Mom)
Our journey began with our baby boy, Madx Duval Ramirez, on the morning of September 7th, 2019. I didn’t have your typical labor/delivery like every other woman who had their baby in the hospital. Nope, not us. I got to experience the at-home-all-natural birth. The funny ( not so funny) thing is we didn’t even know we were expecting. I woke up like any other day but on this day I thought I had an accident ( girl problems). So I hopped in the shower and from that moment forward my life changed in the blink of an eye. I was having a bad cramp but this time it felt completely different... I felt a pressure down there and when I went to touch myself all of a sudden this baby comes right out of me still in the amniotic sac connected to the umbilical cord and everything! It was completely mind blowing. I stood there in the shower in shock not knowing what to think or do. I remember standing there looking around like ‘Did anyone else see this? Is this happening to me?’ Growing up as a girl I had always watched that show on TLC called I Didn’t Know I Was Pregnant and now to be personally experiencing it I just didn’t know what to think. I wasn’t exactly freaking out… I actually held my composure pretty well. Once I took things in and realized what was going on I laid him in the shower and I’m on the floor thinking what to do next. From there I think the motherly instinct kicked in and told me to open up the sac. So once the sac was opened up he took his first cry/breath so I knew he was as least alive and breathing. I laid him down on the shower floor and went to get his dad. I woke him up and let him know hey, I just had a baby in the shower, you need to call 911. I remember him talking to me like I was crazy. “Miranda, what are you taking about? What baby in the shower?” is exactly what he said. So he follows me into the bathroom and sees this beautiful baby lying there and starts freaking out. Then I start to freak out a little but Madx on the other hand is just lying there wrapped in a towel, not crying, not hurt, just lying there so beautifully looking around at everything and everyone like ‘Hey everybody’.
As soon as the paramedics arrived we were transferred to St. David’s Medical Center so Madx could be placed in the NICU. Once admitted they said Madx was 2lbs and gestational-wise about 34 weeks old. He was so tiny and little and I just couldn’t believe he was in me the entire time! The second day in the hospital was the hardest and second most life-changing day ever. I’ll never forget when the doctor walked into the room and had ‘that look’ on her face. We kind of already had a good idea about what was going to take place. She sat down and let me know he is a preemie baby (of course) but on top of that he has a condition called Hydranencephaly and Diabetes Insipidus. Hydranencephaly is a condition in which the brain's cerebral hemispheres are absent and the remaining cranial cavity is filled with cerebrospinal fluid. Diabetes Insipidus is where he can’t control the hormones his body produces so he may either produce too much urine or too little, and in his case his urine output was way too high. So he has his brain stem to where he can preform the normal basic baby functions like eating, sleeping, crying, peeing and pooping, but as far as growing up and having a normal life it’s not predicted or guaranteed at all. She said children with this condition typically only live a couple of years but even if they did live more than 2 years he will need major care to come with the complications as he grows.
My world shattered right then and there, from it being the happiest time of our lives and having this miracle baby to finding out this horrible diagnosis. I just couldn’t believe this was all happening to me within a matter of 48 hours. Of course we took it hard. We processed it and cried and were angry but we knew he was gonna need us 100% and from that moment forward we would no longer be a family of 2 but now a family of 3. I just couldn’t wrap my mind around the fact he had this diagnosis. He looked so perfect in every way.
We would spend the next 45 days of our lives at the hospital with him. He was way too tiny to bring home so the main concern was to fatten him up, get his sodium levels steady, and get him out of the isolate and holding his own body temperature. We struggled each day but we worked hard to get him stronger and able to come home. He began taking Desmopressin twice a day for his sodium which leveled everything out very quickly. He would gain weight gradually then lose some, which the doctors said was typical of a baby. On October 22nd, after meeting with his hospice team and getting everything set up at home, we were finally able to bring our beautiful miracle baby home. It was such a bittersweet moment, of course more sweet than bitter. It was a little sad just because we were leaving all the amazing nurses we bonded with but I was just thankful to be taking him home. We could have been there a lot longer, or could have never even had the chance to bring him home, but we did. I’m so grateful for all the love and support and prayers we received from everyone… it means so much. Even though we have a long road ahead of us and have much to learn still, we have so much love and support from family and friends and from his hospice team at home. Madx is loved and such a blessing in so many ways. I can’t wait to see where life takes us over the years.
What advice would you like to give to families experiencing the same or similar circumstances?
It’ll be okay... you’ll get through it. Cry, laugh, be angry, it’s all okay. You’ll have your good and your bad days but for the most part you have to pick yourself up and just keep moving forward. Just love them every second you have them with you.
What advice would you like to give readers who know a family with a warrior/warrior princess baby? (What can they do to help? )
Be there for them as much as possible whether it be a phone call to check in on them, cooking dinner for them to eat a nice warm meal and not fast food, or running their errands just because they have no time to do so being at the hospital or at home 24/7. Let them know they can call on you whenever they need something.
Is there anyone you would like to publicly thank?
We would like to thank all the nurses and staff at St. David’s Medical Center. Without them we wouldn’t have learned everything we know now. Thank you to all the NICU nurses that took care of our sweet baby boy during his time in the NICU, most importantly his primaries (main nurses) Pattie & Vangie. And also Dr. Goetz. All of these ladies were phenomenal in every way possible.
I hope anyone reading our story can take some time and read, donate, or even volunteer their time to the Ronald McDonald House in Austin, TX. They helped my family out in so many ways. They provide a place to stay with all the everyday living essentials (soaps to bathe with, laundry facilities to wash, family rooms, and even 3 daily home cooked meals) all free of charge. Without them we wouldn’t have been able to be so close to our baby boy. Please take some time to visit their Austin location, it’s beautiful!
Their Christmas miracle arrived a few months early. ❤️
“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.
