I started writing this post a year and a half ago and never finished. This is Maddie’s story…
I was one of the first people to know my sister was pregnant. I was overjoyed, even more so when I found out she was having a baby girl. Madison Victoria Pritikin. MVP. We shopped, had a baby shower, planned a trip to Disney for Thanksgiving and basked in the joy of a perfect pregnancy. Then everything went wrong.
This post is Maddie’s story, but my journey with her.
The plan was Maddie was to be a scheduled c-section on Labor Day. My family had a great plan for the day. Breakfast with friends, go to the hospital and meet our niece, then a day at the beach. That never happened. On the Friday before, Dori, my sister, wasn’t feeling Maddie moving around. Dori worked at a doctor’s office and had an ultrasound at work. They found a heartbeat, but no movement. They sent her to her midwife. The sonogram there showed the same thing, but also showed a spot on her brain. I got the call around 11:00 AM or so. I flew out of work and to the hospital. They were going to do the c-section at 5:00 PM, at 3:00 PM and ended up taking her around 1:30 PM. It took awhile, longer than it should. I went to the nurses station, where they wouldn’t meet my eyes. They told me Dori was still back there, they were stitching her up. I asked, “Is my sister OK?” The reply, ‘Yes, your SISTER is fine.” I knew not to ask about Maddie. The news wouldn’t be good and they wouldn’t tell me anyway.
The plan after delivery was that Matt, my BIL, would stay with Maddie and be with her in what I termed the “Baby Zoo”. It’s a room with a glass window so you can see the baby getting weighed, cleaned up, etc. Instead, Matt and Kathy, the midwife, came out to us without Maddie. She wasn’t breathing on her own and they weren’t sure exactly what was going on, only that she was very sick. Time stopped. This wasn’t the plan. This wasn’t supposed to be happening.
They finally brought Dori out into recovery. Matt stayed with Maddie. A sonogram of Maddie’s head showed a small bleed on her brain, about 4 mm. Around 6:00 PM, Joe DiMaggio sent an ambulance to pick Maddie up. Now, not being airlifted at this point meant one of two things – either she wasn’t that sick, or she was so sick that time really didn’t matter. The latter turned out to be true.
I stayed in Boca with Dori, after a brief trip home for supplies and Matt went with Maddie. Around midnight I was falling asleep when I heard Dori sobbing into the phone. Maddie’s pupils were fixed and dialated and they didn’t know how much time she had. They weren’t sure she was going to make it through the night. We needed to get to Hollywood. I went to the nurses station and they got us ready to go. (The nurses at Boca Regional Hospital were AMAZING!!!) So I drove to Joe DiMaggio like Mario Andretti. When we got there, the doctor said things were not as dire as we were told, but they weren’t good either. So back to Boca we went.
The next morning, I went to Joe D and Matt went back to Boca. That night marked my first night in the hospital for the week. There was nothing they could do for Maddie, and our family needed to make decisions on how to proceed. Luckily, everyone was on the same page. Living with no brain function wasn’t living. But there are things that needed to happen before we could let her go.
And here is where I picked up. Interesting how time changes perspectives and views. Here’s a Reader’s Digest version of the rest of the story.
The plan was to donate Maddie’s organs. They had to determine that there was NO brain activity. They did numerous brain scans, which showed blood flow. It was flowing the wrong way, but that still created a problem. The head of the ethics committee happened to be one of Maddie’s doctors, so after a meeting, we were able to let Maddie go. Her heart was donated to a baby in Arkansas who sadly didn’t survive. Some organs were donated for research.
Here is what I have learned…
- Donating the organs of an infant is heartbreaking and difficult, especially when you can’t find a match for them. It makes sense though, since most children aren’t born so sick and need older organs.
- The entire staff at Joe DiMaggio Children’s Hospital is made up of amazing and special people. They treat the whole family, not just the patient.
- Even in the face of tragedy, you can laugh. Maddie had her first and only girl’s night when my friends Sara and Jen came over to play Rummikub. Laughter is healing and necessary.
- Not everyone “gets it”. I had a co-worker tell me that this didn’t happen to me. Losing a baby in your family happens to everyone. Trust me.
- Everyone has a story better than yours and worse than yours. I had 4 miscarriages and they were early on. I have had friends and family lose babies at 5 months of gestation, have to make life or death decisions regarding their babies, have healthy babies, adopt babies they later realize are very sick, the list goes on and on. Appreciate your life and what’s in it.
- My kids are amazing. When all of this happened, we didn’t want them to see Maddie all hooked up to tubes. We brought them to the hospital to see Dori and they asked to see Maddie. A counselor at Joe D talked to them (see comment #2) and they spent time with their cousin. Children are amazingly resilient and loving.
- Death can bring healing. Family members who haven’t talked in years bridged the divide and became close once again. Things like this make you realize what’s important.
- My sister and BIL are two of the strongest people I know. Period.
- Our family as a whole is strong as a rock.
- Without Maddie, there would be no Gabby. Our niece, Gabrielle Hope Pritikin was born 11 months after Maddie died. She is such a happy, joyous little girl with a very special guardian angel looking out for her.
We often think of Maddie and miss her. But I think the mourning for her is the loss of what could have been, the possibilities, the hope. She never suffered and was surrounded by love during her short time here. You could feel her spirit in the room, and while the situation was tragic, there was rarely a pall of sadness in the room. It was almost as if she wouldn’t allow it. Nurses fought over being with her. I think they could feel her joy, too.
Today marks two years since Maddie came into our lives. It seems like yesterday and a million years ago, all at the same time. RIP our MVP. We love you, miss you and honor you.