Mom to Maddox Ford
November 7, 2011 – December 26, 2011
I found out I was pregnant with Maddox Ford May 20, 2011. It was a Friday and I was at work. I was so excited about being a mom and my family was, too…finally, grandkids! The first ultrasound and every doctor’s appointment I grew more and more anxious and fell more and more in love with my child I hadn’t even met yet. My pregnancy was easy, no morning sickness, no issues. I was a healthy 26-year old with a whole new world in front of me. I didn’t get any of the genetic tests done, or any of the other tests done, because I was a low risk pregnancy. Once the first trimester passed, I thought like everyone else thinks, I’m in the clear. It never really occurred to me that something might actually happen to my baby.
Saturday, November 5th was our baby shower. It was so exciting and so amazing, all the love and support people were showing me and my baby boy! All the wonderful, cute things I got for him. I couldn’t wait to dress him up and show him off. I guess he couldn’t wait, either, because the next day I went to the hospital with cramps and bleeding. The first glance with the ultrasound showed he was already in position on my cervix, ready to go. I was just 28 weeks and 3 days. I had read all the books, and knew where he was at developmentally and was so scared.
After a day of contractions, steroids, and medicines to stop my labor, Maddox Ford Gettys was born at 6:49am, November 7, 2011. He weighed just 2lbs 6oz. The most exciting day of my life was already here, and I couldn’t even be excited because I was so scared for him. Anything could have happened to me and it wouldn’t have mattered as long as he was alright. After incubating him and doing standard tests on him and assess his health they immediately knew something was wrong with him, other than just being premature.
He was transferred that morning to Hinsdale Hospital, where his doctors sent labs, x-rays and tests to specialists all over the country. They spent the next two days trying to figure out a diagnosis. They believed he had a rare genetic skeletal disorder called campomilic dysplasia. He was air lifted at just 2 days old to his final hospital, University of Chicago. At Comer Hospital they are supposed to have the best NICU and genetic specialists for his condition.
With this rare condition, he had bowed legs, clubbed feet, one leg was longer than the other, one arm was longer than the other, the bones in his neck were small and fragile, and the biggest issue was that his chest cavity was too small to support his lung function. Most babies born with this condition don’t survive past 2 days. Most of the babies with campomelic dysplasia are aborted, and often are stillborn.
Maddox didn’t have a lot of ups and downs while he was in the NICU; he didn’t even really have very many preemie issues, but campomelic dysplasia is almost always a fatal disorder. Right from the beginning, the doctors never really had anything positive to say, and were almost “urging” me to make a decision: keep him on the ventilators, or turn the machines off. How were we supposed to choose a day for our baby to die? After talking with my family and friends, my boyfriend and I decided that we would let whatever happen that was going to, and that Maddox would tell us one way or another what he was capable of.
I’m glad we made the decision we did. I was at the hospital every day, and most nights stayed at the Ronald McDonald House. After the first meeting with the genetic councelors, when he had been at Comer for a couple of weeks, the doctor had put him on DNR. There was no way I was going to be an hour away from my baby…what if something happened to him and I wasn’t around? I would never forgive myself.
During our short stay, Maddox and I had so many visitors; the lady at the entrance for the NICU would always tell me that I shouldn’t be letting so many people around my baby, but we knew what little time Maddox had, and wanted everyone to have the opportunity to see his beautiful face. I was there with him everyday. We had a photo shoot, and had story time. I changed as many diapers as I could and brought in bedding friends had handmade for his NICU bed. I even got to bathe him. I took advantage of every second with him, holding and kissing him, never wanting to let go.
After seven wonderful weeks with him, his lungs began to fail him. Christmas Eve and Christmas Day were up and down. I tried to spend time with my family, but there was no place else I wanted to be but with my son on his first and only Christmas. His PDA was open and fluid was shunting to the wrong places…the doctors found traces of blood in his lungs…he ventilators were all the way up, but still he was not maintaining his oxygen levels. All my family was there and we brought him up stairs to a big room so we could all say our goodbyes.
I held him for hours and hours. Finally, we knew we couldn’t keep him in this pain, and removed his tube. My initial reaction was “Maybe he’ll breathe on his own and he’ll be fine,” or, “Hurry, just put it back in,” because I just couldn’t let him go. We knew he was in pain, we knew he wouldn’t make it. So, we just held him as he drew his last breaths. We told him we loved him, that we were so proud of him. Mostly we told him that it was ok. We lost our precious Maddox December 26, 2011. It was the hardest thing I’ve ever watched and to this day just the thoughts of those final moments with him brings a flood of tears.
After he passed, we took pictures, which I still have not looked at, bathed him, got foot and hand prints and molds. We put him in a Spiderman onesie that was much too big for him, but he looked so adorable. We held him until the funeral director came and got him. I did not want my precious Maddox spending any time in the morgue. I was a complete wreck.
Now as the weeks turn into months, I just brace myself for the milestones. The pain is not as debilitating, but it’s still very raw. I still have jealousy and hate toward pregnant women and babies, but try to tell myself I don’t know their story. It’s hard when I do, though, and wonder, “Why are you blessed with your baby when you aren’t even a fit parent, but mine was taken from me?” I still don’t congratulate people, or go to showers or birthday parties. I know I can’t handle it and try not to put myself and others in that situation. I’m trying to live my life now not taking anything for granted and by doing good for other people. I know Maddox would want that from me, and I try to make him proud. I know these feeling will remain for a long time, and that maybe, when I am blessed again with a child, it will be easier. Everyday though, I am learning to live with this new normal, and having an Angel baby.
You can contact Lisa at L_banko@yahoo.com.