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My Mariah
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Justin Glodowski

Picture captions: Justin with his daughter Mariah, Mariah at three years of age. She will soon finish first grade!


I’ll start off by saying that I’m a single father, but not Mariah’s only parent. Mariah’s mom does her part as well, we just do our parenting most times separately. Now, with that being said, the past seven years of being a special needs parent have been harder than I ever could have imagined.

I was twenty-three at the time of my daughter’s birth, with anything I could have wanted in my future. I had a great job and was attending college with classes for architecture and psychology. Nothing was going to stop me. That was all about to change. My daughter, Mariah, was diagnosed with gastroschisis before she was even born, about halfway through the pregnancy.

People tried to explain what was really going on with Mariah’s condition to her mom and me, but either nobody really knew, or we were just deaf to it because we didn’t want to accept the outcome.

Baby Mariah


Mariah was delivered seven weeks early. From the time we had the diagnosis to her birth, I had no clue what I was in for. When it really comes down to it, I had built up this belief that nothing worse could happen to her. I felt “it can’t happen to me.” I was wrong.

 Justin with his daughter Mariah.

Mariah had her first surgery done when she was three days old. (Many more would follow.) Her mother and I were brought into a private room in the neonatal intensive care unit (NICU) after her surgery was finished. We were reassured that surgery had gone well, which was a relief.

Immediately after we were given the good news, though, came the devastating news. They told us that her chance of survival was slim to none, and that we should start getting things in order to prepare for the worst, which in this case was death. I had already fallen deeply in love with her. I wasn’t going to believe it.
At first the team of doctors had given her just a week to survive, but almost certainly no more than a month. All I had ever wanted from life was to be a dad, and to watch my children develop as they grew, but that was about to be taken away from me—or so I thought.

The first-month mark passed, then the next, and the next. Mariah’s mother and I eventually got tired of hearing that our daughter wasn’t going to survive and there was no chance. We ended up switching hospitals and getting a second opinion. That ended up being the best decision we’ve ever made.

 

Nutrition Support


For the first two years of her life, I wanted nothing to do with Mariah’s central line (for her parenteral nutrition) or her feeding tube. It wasn’t because I didn’t care, but because I in no way trusted myself for that big of a responsibility. I always thought that as soon as I touched any of that, I would hurt her somehow. I was around, don’t get me wrong, but her mother deserves all the credit for caring for her lines.

Over the years, Mariah has had three STEP surgeries (serial transverse enteroplasty procedures) and well over fifteen line replacement surgeries. She has been in and out of the hospital so often that for a while I considered it to be my second home. I have watched her become septic and be operated on right in front of me. I have laid her on the operating table with tears in my eyes, knowing the possible outcomes.

I have, on numerous occasions, had to reassure Mariah she is “normal,” just a little different. She has said to me, “Daddy, why did I have to be born like this? It’s not fair.” She has said, “I wish I had a new life because I don’t like this one.” As a father, you feel like you have to protect your child to death, but how do you protect against something you’ve got no weapons against?

As of now, Mariah is still on home parenteral nutrition (HPN)—which, by the way, I fully mastered a few years ago. We have been seeing improvements over the past six months, although Mariah has been evaluated for an intestinal transplant and is on a waiting list because she has lost all central line access in her torso. She currently has a central line in her femoral artery [a large artery in her thigh].

 
 Mariah at three years of age. She

will soon finish first grade!


We know we’re still a little while away from being line free, but the goal is still there. Hope is always there. In the meantime, Mariah has grown into a smart, caring, and loving first grader, and I couldn’t be more proud of her.

For New Dads


For the new dads or dads who are just starting this journey, I want to let you know that this will be hard. There will be days when self-pity almost eats you alive. There will be days where you feel like you can’t go on. I’ve been there.

There will also be days, though, when you can’t believe how blessed you are just to have met that wonderful child, and to be so lucky as to be the one they call “Daddy.” Days where you look at your child and your breath literally gets taken away by his or her beauty and strength.

I have friends, who I now consider family, who have lost their babies to this condition. I can’t fathom what they go through, but through their struggles, they have taught me to embrace every day I have with my little one.

I say, hug them, let them know how much they mean to you, and say I love you at every given opportunity. Tomorrow isn’t promised, so take advantage of every minute you get with them. Last of all, you are not alone. We’re all in this together. I will be more than willing to emotionally help anyone I can. I’ve been there.

 

May/June LifelineLetter, 2018

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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