“Grief is just love with nowhere to go. It cannot be fixed, but simply tended to.”
Our story starts with sharing two amazing little girls, Mia (5) and Quinn (4). Jesse and I felt our family wasn’t complete yet. After finding out we were expecting a precious babe, we decided two things- 1. We did not want to find out the sex of baby until delivery and 2. We knew exactly the name for whether it be boy or girl. Come week 22, at baby’s anatomy scan, signs of hydrops fetalis were discovered. The unusual part of our story was how we were led to the SHINE program after this diagnosis. At the time, we were doctoring in Fort Dodge at UnityPoint as we lived in the area. We had plans to move to the Des Moines area before the school year started for August 2021. With needing confirmation of diagnosis, we met with a specialist in Des Moines, in which we found baby not only had hydrops, but also a large cystic hygroma and anhydramnios (lack of fluid around baby).
Our story begins with us learning about our pregnancy at the beginning of the year. We were so excited after trying for 4 years for another child. But our excitement was quickly pushed out of the way when we learned that our baby had a life-limiting diagnosis. We got the diagnosis of anencephaly when we were 11 weeks along. We were told that our baby would die in utero, or be still born, or not live long after birth. We were given our options and chose to carry our baby as long as God see fit, and to enjoy every moment we had with our little one. Soon after we got our diagnosis, we were introduced to the SHINE team. We hadn’t told anyone about our pregnancy yet, let alone our diagnosis, so we needed assistance in trying to figure out how to tell our
families and friends, but most importantly our 5-year old son, Judah.
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"Pregnancy in and of itself is challenging enough. Pregnancy complications add several more layers of challenges and emotions.
Why us? Have others been through this before? How do we tell our family and friends? What about our toddler at home?
The SHINE Perinatal and Pediatric Palliative Care Program with Blank Children’s Hospital was and still is our best resource to help find answers to these challenging questions.
Around week 16 of our pregnancy we discovered one of our twin girls was slightly smaller than the other. We were sent to a neonatologist where we
were told that our daughter, Harlyn, would very likely not survive due to having restricted growth concerns. Our doctor referred us to SHINE (a service we had never heard of) and set up our initial appointment and meeting – even though we weren’t certain we wanted to attend. But we are so glad we did!
The first thing that stands out to us about SHINE is their ability to listen. They truly cared and didn’t try to have an answer or solution for all our questions or concerns – sometimes, they just listened and tried to comfort us or give us a hug or share a story. We felt like we had an advocate throughout our entire journey.
They also encouraged us think about things that no parent should ever have to but looking back, I am so glad we were prepared for everything that was about to come our way. Being pregnant with twins made things a lot more complicated and they did an excellent job talking through all the situations and being prepared for the absolute worst. They also walked along side us the 43 days we were in the NICU with our surviving twin, Finley. They visited on a very regular basis and made sure we had access to any available resources.
We know that even now … almost two years from working closely with the SHINE team … we can reach out and they’d do everything they could to help. We are forever thankful."
Brian and Amanda Baartman
"At 20 weeks in utero, at a routine ultrasound, doctors found some abnormalities pointing to complications in their first pregnancy with their son, Kolbe Scott Hurd. Kolbe was eventually diagnosed with a lethal condition called Triploidy. This diagnosis has a 0% survival rate. Colin and Kimberly were blessed to carry Kolbe for 33 weeks. He was born on August 26, 2015. Kolbe's life was short but not insignificant. He made a tremendous impact in the lives of many others in his 33 weeks of life. The S.H.I.N.E. team worked with the Hurds during and after their pregnancy with Kolbe. They were the first people, outside of their immediate families, to hear Kolbe’s story. They also offered an extra layer of support to help provide encouragement and strength during the most devastating loss a parent can face.
The Family of Knox Ogg
It so happened, in the weeks of what felt like the worst waiting game, I was searching for a program to donate money to for families/babies like ours. I knew that friends, family, and members of our small community would want to try and help us in some way, and this was what I wanted our baby to be remembered for… for in his/her name there would be some other person who would be helped. I found the SHINE program and loved what they had to offer to families. I contacted Rachel, their Annual Giving Director, and explained that I was wanting to set up a donation page/link and told her why. After hearing our story, she spoke with Dr. Moser who encouraged me to take a look into their services. It was from there that I began working with Stephanie Nemmers. Between weekly (more often than not, twice weekly) calls or holding virtual appointments to check in, she offered us what I can only consider God’s purest form of human kindness that I could find during such a rough time in my life. She began helping me glue my broken pieces back together before they could totally shatter. I spoke with the team’s Child Life Specialist in reference to our daughters, which was a huge worry of mine. Luckily, they were able to guide me through that stressful time in explaining to our daughters what was going on. I was given endless resources and gifts that memory making to honor our soon to be angel baby.
At our week 28 appointment, baby was found without a heartbeat and unfortunately had turned breach. It was in our best interest to deliver at a hospital in Des Moines where my OB felt I could and would receive the best medical advice and care possible for our given situation. It was in my hospital stay at UnityPoint that I finally got to meet with Stephanie face to face, and with the exclusion of our medical team (who consisted of one amazing woman after another), she was the only person I wanted to see. In the early morning hours of July 2nd, 2021, we welcomed our son, Knox Michael David Ogg. In that moment, hearts simultaneously fell in love and broke into endless tiny pieces. The days, weeks, and even now, months later, it has only continued to be shown that Stephanie and her team are truly doing God’s work. Between emails, connecting us to this beautiful opportunity of the FAM Turkey Trot, referring me to a wonderful therapist, and so much more, there are not words to perfectly describe how unimaginably grateful we are for the SHINE program.
Knox continues to be missed and loved so strongly every day. Grief is just love with nowhere to go. It cannot be fixed, but simply tended to. Moments like these, of being surrounded by families and friends who have experienced (to some degree) this kind of loss may hopefully see all of the broken beauty behind this gathering and feel blessed to feel such love all the way from Heaven. It is my belief they are all here, each and every angel, walking beside us, and loving us for each step we take today, and every other day.
Jon and Dani Markus
He had been asking for a little brother or sister for some time now, so we were concerned about telling him, and making sure he understood what was going on. The SHINE team walked us through and gave us some great advice, as well as did some advocating for us through the restrictions with COVID-19. Brian was able to be by my side with a little help from SHINE explaining our situation and we also got to see our baby with an ultrasound at every appointment.
About a month into COVID-19, we learned 2 new things about baby. We learned that our baby also had Trisomy 18, another condition that is typically incompatible with life before the first year. While this was a little upsetting, we already knew the prognosis for our baby. We also learned that our baby was a boy! We decided on Josiah Levi for a name.
It was hard to try and make memories of our pregnancy while being in quarantine. SHINE did a great job of checking in on us every week to make sure we were doing okay and offered us many different ideas on how to make memories. One of our favorite memories that we made as a family was an idea given to us from SHINE. They gifted us with Build-A-Bear recorders to record Josiah’s heartbeat on them. We did that and when COVID allowed us, went into Build-A-Bear and made a bear for mom and dad and a bear for brother, each with a recording of Josiah’s heartbeat. Those bears will always be very special to us and we are so thankful that SHINE had given us the idea to do it!
We had 35 wonderful weeks together with Josiah. He was born still on August 14, 2020 at 11:37 PM. He was 2 lbs 3 oz and 14” long, and we spent the following 18 hours together as a family of 4. Even during one of the most tragic times of our lives, we were shown so much beauty by the grace of God. I am so thankful for the time we had together here on earth. But we are even more thankful that we know his spirit will never die and we will be reunited with our little dove in heaven one day.
Life need not be long to be meaningful
Colin and Kimberly Hurd
Jon and Dani Markus were looking forward to welcoming their second child, due August of 2019. They learned at their 20 week ultrasound that the baby was diagnosed with hydrops fetalis. Hydrops is an abnormal accumulation of fluid in two or more of the baby’s compartments, can have numerous causes, and has a very poor prognosis (5-10% survival rate). After further testing, the cause was determined to be a congenital cytomegalovirus infection.
Jon and Dani then learned the baby was a boy and named him Leo Jonathan Markus. Soon after the diagnosis, they were referred to the S.H.I.N.E program, something they weren’t aware existed but very much appreciated
Stacy and Jared Holtgrewe
The Hurd’s goal was to make a lifetime of memories in the few hours they would have with their son. S.H.I.N.E provided this as they helped in planning and executing their birth plan. They had molds and other various materials ready at the hospital for memory making items that the Hurds could take home.
The S.H.I.N.E team continues to reach out to the Hurds, providing still a layer of support as they continue to grieve the loss of their son. Colin states, “I would recommend anyone experiencing an in-utero diagnosis to utilize the support of the S.H.I.N.E program.” Kimberly adds, “Kolbe’s story would not be the same without them. We would not have had the important resources we did. They are and will continue to be a part of our lives as we continue to grow our son’s legacy.”
Most parents are given the opportunity to raise, nurture, and help their children grow. Unfortunately, this was not the case for the Hurd’s with their son. Colin and Kimberly decided to take the energy and time they would have spent raising Kolbe to make a difference in other people’s lives. After this devastating loss, Kolbe’s parents wanted his legacy to continue on in a tangible way. They have invited other families who have experienced or will experience the loss of a child to participate in helping to fund the monetary needs to build a 12-child home in India. Their hope is to give families a simple, yet meaningful, opportunity to create a lasting legacy in honor of their child while also making a difference in the lives of other children."
as they navigated an unimaginable situation. The team at S.H.I.N.E. was there to provide valuable multi-disciplinary support. They allow families to opt in for as much of their assistance as needed, making the care extremely personal. Leo’s potential outcome was widely varied from death to being disabled, and the team helped prepare for the worst while retaining hope. Further, the team was extremely supportive of the shared healthcare Leo and Dani had between the UnityPoint and University of Iowa care teams.
Among the most valuable assistance provided by the team was guiding Jon and Dani when it came to discussing Leo’s illness with their two-year old daughter, Eden. As a result, the entire family was able to navigate the rest of a very challenging pregnancy and ultimately Leo’s stillbirth on May 20, 2019, in an open, healthy manner. Unfortunately, Eden is more familiar with death than anyone would wish, but she knows she has a forever baby brother in heaven. She has demonstrated so much love and empathy for such a small child and amazes everyone around her. A huge thank you is owed to the S.H.I.N.E. team for providing expertise in this area as it was difficult to know how much to share with Eden and what words to use with her.
One of the Markus family’s main goals is to raise awareness of congenital cytomegalovirus (cCMV). Dani was unaware of the risk of contracting this virus during pregnancy and the devastating effect it could have on an unborn baby. Please visit the National CMV Foundation to learn more about the risks and prevention measures to avoid CMV from impacting other unborn babies.