Marianne Neerman is a long time reader, a registered nurse, and a mother raising her family in Georgia. She has suffered and survived the abuse of a child, premature births and death. She is the mother of four boys,
Evan, Grant and the surprise baby Colby.
And Owen. Her third son. Her angel.
Normally I meet with the mothers that I profile for this series, but our geographical distance made it impossible this time, and I regret it. I would love to have sat with Marianne, in her home with her sons and husband Brandon, while she shared Owen’s story with me; his short life and the indelible mark he left in all their hearts.
Marianne’s mothering journey began in tumultuous, heart-wrenching fashion.
My first son came in September 2001. It was not a difficult transition. I loved being a mom. It was much harder for my ex-husband. He’d been laid off due to the tech bubble bursting and was staying home with our son while I worked. I came home from work with my 2 month old baby covered in bruises. Chris said that he’d let the baby play on the floor with the dog and the dog ran across him. Then one weekend, Evan started to throw up. Nothing I did helped, so I took him to the pediatrician. Then they sent him to the hospital for fluids. They saw that he had something on his brain. Then they sent him to a pediatric ophthalmologist, who said he had retinal hemorrhaging. This all added up to shaken baby syndrome. The county took my baby away. I ended up leaving him (obviously). Fortunately Evan has no continuing problems. I used to say that your baby being in foster care was worse than him being dead becuase you didn’t know how your baby was being treated. Its not worse. Trust me. My “new” husband is his dad and treats him way better than his father does. Evan does have contact with him. Supervised visitations. Chris never calls him on the phone or anything. He has no contact between times when he sees him. Can you imagine?
Evan was in foster for about 3 months. I moved in with my parents and had to show I was completely separated from Chris. I’d have done it the night they took him away if they’d told me that was choice. I was young and naive, so the attorney my parents got for me told me. Luckily, I had my parents close by to help me. I felt like I’d lost “all” of his baby-hood. In reality, that’s only a small portion of raising a kid, and the fun stuff isn’t all when they are babies. Evan just asked a girl to his first dance! I got to help remember how to treat girls and good manners. I also got to build up his confidence and remind him she said yes to him! It was so fun watching him enjoy his first “date” at the 6th grade school dance!
Tell me about meeting your current husband? Owen’s father.
My husband and I met online in the early years of meeting online. We didn’t tell anyone at first because I was embarrassed to let everyone know we met in a yahoo chat room. Now, no one would even care! We met in 2003 right after my divorce was final, Evan was 18 months old. We were married in 2006. Right after Brandon and I got married we found out we were pregnant with Grant it was fabulous. We were excited. He was born at 33 weeks because I was terribly preeclamptic. But he’s done just fine. He is the mini-me of Brandon. Then we found out we were expecting Owen. I was taking the mini-pill becuase Grant was still breast feeding and and only 3 months old! We debated about whether we really wanted another baby. I balled my eyes out! I wasn’t even hardly done being pregnant, I’d had such a hard pregnancy that almost killed me. But in the end we knew we wanted him too.
Was Owen a healthy baby initially? How long before you realized something was wrong?
At 31 weeks we went to neonatologist appointment. They were doing a very thorough ultrasound. We brought Evan along with us to let him participate. He was excited about the new baby, etc. But I knew something was wrong. OB ultrasound techs are always a talkative bunch, excited to show body parts and gender, etc. She kept getting quieter and quieter. I finally asked her what was wrong. She said the doctor would have to come talk to us (famous last words!) So Owen was in distress. He didn’t have enough fluid, wasn’t doing all the things he was supposed to be doing, and was extra small for gestational age. We had an emergency c-section within 2 hours. He was extra small for 31 weeks. He weighed 2lb3oz.
He was tiny. I’d already had a small baby, Grant was 3lbs 2oz and we still thought Owen was small.
We got to see him for about 5 minutes in the plastic cradle box thing from the NICU before the mobile NICU raced him away to bigger hospital on the northside of Atlanta. It was horrible to watch your tiny baby whisked away with lights and sirens. It was also horrible to spend the night in the hospital hearing other babies crying in the rooms next to you but your baby is across the metropolitan area from you. Its the WORST ever to leave the mother/baby unit without your baby. Just horrible. It does not get easier with practice.
So then Owen got necrotizing colitis in the nicu. Luckily he did not require surgery. He finally got to come home after 4 weeks just 3 days before Grant’s first birthday. He weighed 3lbs.
He was doing ok. He didn’t grow well, but he did ok. He also wasn’t meeting milestones, but at first we blamed it on his immaturity. Then we started occupational therapy in order to help him. He was having some trouble nursing and ended up get aspiration pneumonia in November. The night he got really sick, I feel so terrible because it was the first night in over a year I ended up sleeping through the night. He was sleeping with a fever and I slept through it. Ugh. Horrible.
Rounds and rounds of hospital and Doctor visits began..
So we went to see a gastrointestinal doctor. He had us do a swallow study and we found out he was not swallowing properly, but his milk was going into his lungs. So we stopped breast-feeding, started him on thickened formula. We were thickening to pudding consistency. We were buying all kinds of bottle nipples to try to help him. His suck still wasn’t coordinated. He was barely rolling over even though he was 6 months old. Therapy was helping, but it was slow and hard.
We finally got in to see the geneticist who gave us a diagnosis of Rubenstien-Taybi syndrome. We studied that disorder, which is similar to Down’s Syndrome, until we knew it backwards and forwards. We educated the doctors we saw about it. By this time we saw so many specialists that it was hard to keep up with it. He saw pulmonology, cardiology, urology, PT, OT, and ST. Then he got Roseola. His pediatrician sent us to hematology. His blood counts were low and they weren’t sure why. So they decided his white blood cells were low after the virus and we’d recheck in a month. Before that month was over, he got a terrible fever, like 104. We took him to the local ER where the doctor just closed off before we could finish telling him Owen’s whole history. He finally just took some blood and said to visit our pediatrician in the morning. We went to see the pediatrician who admitted him immediately to Children’s Healthcare of Atlanta. He stayed there for 45 days straight.
That was really really hard on me because my husband wasn’t working and I was working. Our health insurance was through my work, so I had to continue to work. Before he got sick, I’d also decided to go back to school to finish my degree and become an RN. So Brandon stayed in the hospital with Owen, while I took care of the other boys and worked and studied. During this time, was when we found out that he had a complete bone marrow failure called Dyskeratosis Congenita. The bone marrow is what produces the cells the blood uses to do all its jobs including the immune system. He specifically had a variant called HH Syndrome. Hoyeraal-Hreidarsson syndrome is the actual name of the variant he had.
It was hard. We flew out to Minneapolis MN to see a specialist in this disorder. Dr. Jakob Tolar. He told us that even with the bone marrow transplant, Owen would probably not live to be much older than a teenager. It was pretty upsetting. We stressed about how to get our fragile kid through airport security. That was stressful. By this time he’d been on tube feedings through a tube into his stomach and they had to feel up the bottle. I just imagined all the germs these strangers were exposing my kid to. It was excruciating. By that time, we were going for weekly blood transfusions, platelets, and immunoglobulins. We had to get Evan and Grant tested to see if they had the disorder and to see if they could be a bone marrow donor. We were so excited to learn that Grant was a perfect match. Perfect match. We were so ecstatic and relieved. It was a miracle. We were overjoyed!
And then a big surprise.
Then we found out that despite my Mirena, we were expecting again. Yeah. Another birth control baby. Not only that, but I was 13 weeks along. How did I not know? My husband can’t keep his hands off me!
In the midst of all this fear and sadness, there were some times of happiness and special memories.
So then we had Christmas. We were so blessed that our church got together and gave our boys so many christmas presents! We really couldn’t do it. Its so hard to make financial decisions. When your food budget is $450 and one kid’s tube feeding is $350 a month. How do you choose between feeding everyone in your family or the one boy who needs it the most? We had so many miracles during this time. Some how we managed. God just really took care of us. Christmas was amazing. We were at a candlelight service at church and Owen was singing and dancing. Everyone in our church was watching him and enjoying seeing him smiling. It was another miracle. He actually even said hot! That was the best ever! Its amazing how proud you can be of one little word.
I remember he said Mommy once. I was with him in the hospital and thought he was napping. I called a nurse into the room so I could go to the vending machine to get a drink and snack (we never left him alone). As I was walking out, he sat up and yelled Mommy!!!! I couldn’t leave him for a while after that. I just held him. I had to. Now that memory is so precious!
The end came unexpectedly and far, far sooner than they ever anticipated.
So in January, he got another fever and was admitted to the hospital again. This happened pretty regularly. We just kept a suitcase in the trunk of the car for when it happened. But this time, it snowed. Like 8 inches! Tons and tons of snow. So there was no way we could leave. So I rolled him around the hospital in a wagon. I feel so guilty about this. I should have kept him in his room. But we were both antsy and we wandered around the hospital. He probably picked up some germs during our walks. I feel so guilty about this, so so guilty. A week later, he was readmitted with RSV. The RSV went into pneumonia. He went to the ICU and ended up on a ventilator. They kept trying to help him. But when you have no immune system and a terrible virus with no way to fight it. Finally the doctors sat us down and explained there was nothing left to do. Brandon and I talked it over. Beth, the music therapist in the hospital who Owen adored, came to sing to him with my husband’s best friend who is the music minister at our church. He loved music very much. He just adored it. I left Brandon to spend some itme with Owen alone. It was much harder for him. I knew from the beginning that there were only two outcomes with children on ventilators. We were facing the worst one. He didn’t have the same experiences as I did as a nurse. Owen’s liver was shutting down, his kidneys were failing, and his skin was breaking down. Owen’s cause of death was respiratory failure resulting from pneumonia. It was not directly related to his genetic disorder but a complication of it. He had no immune system by which to fight off the virus RSV which led to pneumonia.
After making the hardest, most unthinkable decision, there was one final night and morning.
I knew there wasn’t anything else to do. Evan came and read a story to Owen. He got to tell him that he loved him. We didn’t let Grant in, he was only 3 and we were afraid that would be too scary. I tried to sleep in the parent room because I was pregnant and needed it. Brandon stayed with Owen. He needed that time with him. One final night. We set the time for 10 AM so that Brandon’s dad could come be there too. My parents kept the big boys. Several of Owen’s nurses came to be with us too. They turned off the ventilator and I couldn’t wait any longer and snatched him off the bed. I disconnected everything. I didn’t want to wait any more. My arms had been empty of my baby too long. I snuggled him and sniffed him and hugged him. Then I let his dad hold him. Owen opened his eyes one last time and looked at us. Then it was over. It was very peaceful. I felt his last hearbeat. He went to heaven while his daddy hugged him tight. His nurses were crying. I was crying. Brandon was crying. But I thank God it was so peaceful. I know in my heart we did the right thing. It still hurts and probably will every day. I’m so blessed to have been his mom even for 2.5 years.
February 8 was the hardest day of my life, ever.
It snowed here on February 9th for like a minute. It was beautiful. Like Owen was telling us that he was ok.
We had his service the next Saturday. Our church was overfilled.
We released yellow balloons.
Tell me about Owen? Apart from the sickness and suffering.
Owen had a fighter’s spirit. For sure. He could get his big brothers to do anything even though he couldn’t talk. He would point and both of them would jump to it. He could tell them “NO” and they would just stop. He touched everyone who got to meet him. I still hear from his previous nurses and how much they think about him. His doctors remember him. When we see them they still tell us stories about how he “made” them do whatever it was. He used to fuss at nurses if they didn’t do things the “right” way. He would point to exactly where they should draw blood from him. And he smiled at everyone. They would be poking him, prodding him, and he’d smile at them.
What is life like now, without Owen?
I am very thankful that Evan, Grant, Colby are all perfectly happy and healthy. I think I am blessed that I am able to take care of 3 beautiful and smart and caring boys. I have a hard time talking about my grief to my friends because I don’t like to burden them. I don’t like for people to feel sorry for me. I miss him like crazy, but I know he’s better off. He isn’t in pain. He can walk and dance and run.
I do miss him. Very very much.
How has losing Owen changed the way you parent your sons?
It’s hard to describe how I’ve changed with my other children. I keep them closer and have more patience with them for kid things. But if they get sick, I usually brush it off, because “its only an ear infection”. Its not like he’s in the ICU with 5 medicines dripping into his veins and a port with a blood transfusion going.
How has this experience effected your relationship with Brandon?
We are closer in some ways and less close in some ways. Brandon kind of blames me for “talking” him into turning off the ventilator. He is also disappointed in himself for not “fixing” Owen. Not that he could have in any way. But Brandon is the only other person who knows what its like to miss that boy. He was one of a kind and together we made him.
I am drawn to your story in part because it encompasses my greatest fear. I think I’m compelled to read these tragic stories to comfort myself in a way. I see your strength, that you did survive and you do have joy again; that it if it were to happen to me, I too could survive it. What would you say to another mother who lost her child or who is facing the death of one?
I would just be close and hug her. There is absolutely nothing you can say to comfort someone that isn’t a platitude. Plenty of very well meaning people said things to me that were meant to be very comforting, but were not at all. I would just hold another mom and just let her have her tears. It definitely is the hardest thing I’ve ever been through. But you will always be Luka’s mom, no matter what. You grew him under your heart. He was literally attached to you, nothing can ever change that.
I still say I’m the mother of 4 boys, not just 3.