Kelly K. - Colin & Nathan
Little Angels
In support of Pregnancy and Infant loss, I’ve interviewed a few amazing moms to share their stories. One in four women experience pregnancy and/or infant loss – and yet it is something almost no one talks about. Many don’t know how to talk about it with those how have experienced it or how to support them. I’m running a series of stories this year to help bring awareness to the issue and to show a face and story behind the statistics.
Happy 3rd Birthday Nathan and Colin!
Kelly has never shied away from sharing about her sweet boys and her strength and perseverance have given comfort to so many others. Here’s her story:
You can feel the love from Kelly just being in the same room as her with her kids. She sits while her boys nap and play around us. She calmly plays with her toddler, attends to her baby, all while talking freely about the most difficult time in her life.
When she found she was carrying identical twins at the end of the first trimester, they thought the doctor was joking. When she found out at 18 weeks they were boys, she was so excited to be welcoming twins to her family. She wasn’t really worried about her babies at first; she thought everything would be fine, and was excited welcome her first children to her family!
The Diagnosis
At a routine ultrasound at 22 weeks though, Kelly and her husband Kevin learned of the diagnosis that would, in the next six weeks, completely flip their world upside down. This ultrasound revealed that her boys, Colin and Nathan as they had named them, had Twin-Twin Transfusion Syndrome. This is a syndrome where identical twins that share the same placenta and blood vessels form that allow an uneven sharing of blood. One baby receives too much of the blood while the other doesn’t receive enough, which can be fatal for one of both babies. (read more here: https://www.cincinnatichildrens.org/service/f/fetal-care/conditions/twin-twin-transfusion-syndrome ).
Kelly’s family was all at the ultrasound where she received the news, and “they kept looking over at me asking me ‘are you alright?’" Based on the information given at this appointment, Kelly felt like they could do a surgery to separate the blood vessels and everything would work out as it should. “My Mother-In-Law passed in May and I felt like she was going to watch over them. She had always told us we would have twins." She left the appointment with a plan for the laser procedure to be completed, hopefully separating the blood flow between the babies.
Reality soon sunk in though. Kelly recalls, “We had driven separately to the ultrasound. It wasn’t until the drive home that it hit me I could lose both.”
Kelly had only a few choices of places that could perform the necessary surgery, but they needed to make a decision quickly. Kelly and Kevin ended up travelling to Cincinnati Children’s Hospital to perform the surgery at just 23 weeks. Kelly was still hopeful, still praying and believing they could do the surgery that would resolve this issue.
“At first, I just thought they were going to fix it, that it’s going to be fine. Only 10% of identical twins have TTTS and of those, in only 10% of the cases is it fatal for both babies.” Those odds felt encouraging.
Then the difficulties of this kind of procedure became all too real. Despite the doctor’s best efforts, the surgery could not be completed (the arteries were simply too big to cauterize for the tools that they had). The only answer to stopping TTTS was to complete this surgery. With the surgery no longer possible, the only remaining option was to try to monitor Nathan and Colin in Labor & Delivery (L&D) and hope for the best. Since her uterus was now irritated, pre-term labor was now at an increased risk. She came out of surgery and was devastated to hear the news that it was unsuccessful.
Kelly stayed in L&D and antepartum for a week, being monitored to make sure the boys’ heart rates didn’t decelerate or show other signs of distress. Kelly insisted on being monitored around the clock until they felt it was safe to reduce the monitoring to 3 hours a day. Kelly and the doctors were even discussing options to be able to travel home to Columbus, OH, so she could have her babies where she had family and support.
After a week of successful monitoring though, Kelly was heartbroken to hear the doctors tell her what she hoped not to hear for months. “They said that Nathan’s heart wasn’t doing well, and that if they were to have any chance of survival they needed to get out now”. Kelly had just a couple hours to prepare for surgery, mostly so that she could receive steroids and magnesium (both of which help preemies).
The Birth
Kelly recalls, “They were too little to come out! I was scared but couldn’t do anything about it, so I cried but took the magnesium like a champ. Anything to help my boys.”
In the operating room, Kelly only got to see a glimpse of both before they were whisked out to the NICU.
Colin and Nathan were just 24 weeks, 5 days old when they were born on December 12, 2013. Being 15 weeks (almost 4 months) early, they were the smallest babies in the NICU.
As is common with TTTS, although inside the womb, Nathan’s heart was the one they were worried about, on the outside, Colin’s heart was worse. As Kelly knew, often the recipient is the one to pass (if one does).
Colin Martin
Right away, Kelly and Kevin knew that Colin was at the biggest risk. The doctors and nurses told Kelly that Colin was a very sick baby. Even at one day old, it was clear it was only a matter of time for Colin. They just didn’t know how much time that would be. Kelly and her husband Kevin had to make the heartbreaking decision of what to do if his heart stops. ‘We had to say ‘Unless it brings us a lifetime with him, do not resuscitate.’”
They were still hopeful though, praying for a miracle. Two days after Colin was born, he quickly took a turn for the worse.
“I cried to Kevin ‘I have to be a mom! I have to mother kids at home’!”
They knew Colin’s condition was serious, but they had to leave the NICU as they did for each shift change. “We all had to leave at 7:00 pm for shift change, so I went into my room to pump, and at 7:30 they called and said I have to get down there right now. I screamed for Kevin.”
They raced to the NICU and their family was able to see Colin for the first time. They went into the family room in the NICU to have more privacy and hold him.
“I was going to let my family hold him but then decided that I’m going to be selfish and hold him alive even if for only 10 seconds. I’m going to hold my own kid!”
Kelly held her precious baby boy, showering him with love, as he passed in her arms.
“He could have been gone already, but after I held him for a minute, they checked his heart and he had passed.” It all happened so quickly, they hardly had a second to process. By 8:00 pm on the evening of December 14th, he was gone. Kelly and Kevin were devastated, and couldn’t understand how it could all happen so fast. Kelly held Colin for hours, dreading the moment she had to lay him down. She couldn’t believe when she put Colin down, it would be the last time she would ever hold him.
Nathan Daniel
Coping with Colin’s death was complicated by the fact that they had another baby to worry about in the NICU as well. “Because I had Nathan, I couldn’t cry every single day about Colin, which sounds bad, but I had another child to think about.” Kelly had no time to grieve, but had to jump on board the roller coaster that being a NICU mom brings. She was thankful though for the good times that she got to spend with Nathan.
“The day after Colin died, I got to hold Nathan. I actually got to do 3 skin-to-skins before Kevin did. He kept saying, ‘you do it’.”
During the next few weeks, Kelly went through so many ups and downs with Nathan. “My day depended on his day. If he had a good day, I had a good day. If he had a bad day, I had a bad day. My mom could always tell what kind of day Nathan had by how I was.”
After 25 rollercoaster days in the NICU, Nathan’s health declined rapidly. On January 7, 2014, the unthinkable happened for a second time. While wrapped in his mother’s arms and bathed in her love, Nathan passed, joining his brother Colin in heaven.
The Grief & Coping
After arriving home, Kelly had to figure out how to somehow cope and survive. “After both died, I had nothing to focus on. On maternity leave, all I was stuck with were my thoughts and memories,” Kelly recalls with tears in her eyes.
A loving tribute to Colin and Nathan, placed lovingly in the living room under the TV. She wanted something she could see everyday.
There were so many emotions and so much to deal with, and as is so common, Kelly had to cope with feelings of guilt. “I wonder if I should have done more? I wonder... I had gone to a hotel in North Carolina and had done a lot of walking. The appointment after, my cervix had shortened, so I wonder if I made it worse. I know you’re not supposed to have a lot of fish, but I had fish. I wonder if these things caused TTTS. But I know it’s not something I could prevent.”
When asked what helped her, she felt like getting everything out helped her process her emotions. “Writing (my) blog really helped me." She painstakingly detailed her time with her boys.
“I know it depends on the person, but if I don’t talk about them [Colin and Nathan], no one will know them. That’s why I wrote my blog, so others could meet them and know them.” (you can read all of Kelly's blog here: www.twotinyangels.blogspot.com)
“I cried every day. I got really good at crying and driving.”
Keeping it together was hard, but thankfully her work was incredibly supportive. “I broke down at work a couple times. But they said if I needed to just get up and leave, I could do that.” Working in Physical Therapy, complaints about various pain is common. But it didn’t make it any easier to hear. “Yes your leg hurts, but my heart hurts.”
It was too soon to answer questions about if she had any children. “I took down wedding pictures at work. I just didn’t want questions at work about if I had kids.”
Future
Kelly knew she was meant to be a mom, and knew the chances of what happened to her happening again were extremely slim. “I asked ‘when can I start getting pregnant,’ and ended up getting pregnant a month before I was supposed to."
Even still, being around babies, in particular boys, was incredibly painful immediately after Nathan passed. “I wasn’t able to hold a baby boy until I was pregnant with a boy. Newborn girls weren’t a problem. I even went to a gender reveal 3 days after Nathan’s death.” She was always happy for expectant moms, she wanted to celebrate and be happy for them. That doesn't mean she doesn't worry about other twin pregnancies.
“I’m always nervous for twin pregnancy for anyone. It’s super dangerous, and I don’t think many people realize. Ignorance is complete bliss in that situation.”
She wasn’t nervous though for her subsequent singleton pregnancy. Her pregnancy went without issues and Sean Colin (middle name in honor of his brother) was born January 2015, almost exactly a year after his brother Nathan passed.
Kelly has leapt into mothering Sean with her fierce love, just as she did for Colin and Nathan before him. She is #lovingeverymoment and was thrilled to add Adam Nathan to their family September 2016.
As is Kelly’s character, she has found the silver lining in the whole situation. “This experience made me a better mom. Crying doesn’t bother me. When he’s fussy, and nothing is wrong, I know he’s just fine. I never heard them [Colin and Nathan] make a peep. When Sean was born, he inhaled some fluid, but they just put him on mommy and he did great.”
“It changes your perspective as a mom. I see pee and poop and think that’s good. It’s what is supposed to happen. With Nathan and Colin, I didn’t get to do the first time mom things, like give them a bath or change a diaper. When Adam came out screaming, I felt fortunate.”
Kelly thrives at being a mom and her example of strength and grace, despite the pain and suffering she has endured, makes her someone many look up to and go to for advice and words of wisdom.
Advice
She knows all too well that other moms are suffering and knows that “everyone’s pain is different.” There is not one simple thing to heal a broken heart.
For those wanting to say something to make her feel better, she says that “there’s not one magical thing to tell me to make everything better. For other moms, I’ll say ‘I’m mad for you. This sucks! I know, nothing I can say can bring him back.’”
She knows everyone is different, but says personally, “I couldn’t hear ‘This is God’s plan.’ No, it’s not supposed to be like this. They are supposed to be home. With me!”
These bears weigh exactly what Colin and Nathan weighed at birth. Kelly knows she has two angels watching over their little brothers.
Really, the time old adage is true. “Time is the only thing that will heal.”
For those who know someone facing infant loss, Kelly says that the “best thing is people just remembering. After a few months, the questions stop. People don’t want to ask.” But Kelly suggests that you reach out to let them know you still remember. “On the one-year birthday, send a note. Let them know you still remember them. Their daughter is still in your thoughts.”
“Some people take a long time to grieve. And it might take a long time to know why they passed. But I know why Nathan and Colin passed. If they had survived, they would have most likely been very sick, very handicapped. Perhaps I would even have two in a wheelchair. My life would have been caring for them. But they passed so I might be able to have Sean and Adam. These two, these are the reason why they passed. There is a reason for everything. You might have to wait to see it.”
Colin and Nathan watch over their brothers always.
Little Angels
If you live in the Central Ohio area, and you would like to share your story, please contact me at miranda@gerberbelle.com.