Support Lucas's Heart Journey

Friends, Family, and Community, our names are Ashley and Adam Giebelhausen, and we are reaching out for help concerning our unborn son, Lucas.

Lucas has a congenital heart defect.

While we aren’t sure of the exact variation, due to the difficulties of imaging a heart a few millimeters across in utero, the pediatric cardiologists at Lurie Children’s Hospital in Chicago are telling us he has condition known as Complex Single Ventricle. He only has one effective pumping chamber in his heart.

We don't know what his first days will hold, as that will depend on how the vessels between his heart, lungs and body develop. Depending on the structure and size of aorta and pulmonary vessels, he will either need a minimally invasive stent placed by cathader, or an open chest surgery to reconstruct his blood vessels, and separate his pulmonary vessels from his aorta. Needless to say, both options have their risks, one more so than the other. Unfortunately we won’t know exactly which procedure he will need until he is born.

We do know is that he will require at least 3 additional surgeries. The first will happen sometime between his third and sixth month and is commonly called the Glenn Procedure. During the surgery, his superior vena cava- the vessel that returns the blood from his upper body to his heart, will be detached from his heart and connected to his pulmonary arteries. These arteries would normally connect to the right ventricle (pumping chamber) of his heart, pumping deoxygenated blood to his lungs. The Glenn will divert a large percentage of the blood returning from his body, away from his heart, allowing it flow directly to his lungs, taking strain off his one effective ventricle.

The second known surgery is the Fontane and will likely occur sometime between his 3rd birthday and 5th birthday. It will remove the inferior vena cava from his heart and connect it directly to the pulmonary arteries as well. The result is that all the deoxygenated blood from his body will flow directly to his lungs, bypassing his heart. Once the blood is oxygenated in the lungs, it will flow back to his heart, and will be pumped to his body by the single effective ventricle.

While we are fortunate these procedures exist, as they are only a few decades old, they are still only palliative. They are life extending, but there are possible complications and limitations. It also means that Lucas will eventually need a heart transplant. There is also a chance that the changes to his blood flow will stress his other organs, the liver and kidneys are particularly vulnerable. When the transplant will occur will depend on how his body is coping with the limitations and will also depend on him surviving long enough.

Based on his current scans, it appears he shouldn’t be at risk until he is born. His doctors are seeing good evidence that nutrients and oxygen from his mom are diffusing normally. His growth is on target, and his other milestones are being reached.

When Ashley was 10 weeks pregnant, we were informed that his nuchal fold was thickened- which can be indicative of genetic abnormalities or congenital heart defects. We immediately did a blood screen, but it showed he was at low risk for common genetic abnormalities, but we did learn that Lucas is a boy. The early finding also gave us the opportunity to research pediatric cardiologists, as that seemed to be where his challenges would be.

Shortly afterwards, we saw our Maternal Fetal Medicine doctor in Bloomington, who was able to confirm the thickening, and as a result, took a closer look at his heart. His heart showed abnormalities and appeared to only have a single ventricle, and we were told we would need to see a pediatric cardiologist.

Thanks to our research, we knew we wanted to go to Lurie Children’s Hospital in Chicago. While Peoria and Champaign both have excellent pediatric hospital, Lurie Children’s Single Ventricle team statistically outperforms the other hospitals in the area, with 92% of patients researching their fifth birthday, as compared to the national average of 80%.

His condition means that Ashley will have to give birth at Prentice Hospital, which is attached to Lurie Children’s at the Northwestern Hospital complex in Chicago, far from home. Lucas will be taken across the bridge to Lurie Children’s while Ashley recovers at Prentice. Once she is recovered enough, Ashley will be able to visit Lucas, while returning to her room for monitoring, sleep, and meds. Adam will be bouncing between the rooms, and keeping our family, including our first child Logan, up to date.

Lucas’s team has told us to expect that he will need to stay in the hospital for roughly a month after he is born. Once Ashley is recovered from the birth, we are expecting to be able to transfer to the Ronald McDonald house, where we will be reunited with Logan, and can split time between the hospital, and making sure Logan isn’t left behind.

We will both be missing a significant amount of work, exceeding our available vacation times, and other benefits. We also need to pay for parking, and gas for the appointments between now and the birth, most of which will occur in Chicago. There will also be a considerable number of appointments after he is born, between the first and second surgery, continuing for the rest of his life. Lucky us, he is due in November so his deductibles and out of pocket max will reset just in time for his second surgery.

We would also like to be able to take Logan to the nearby museums and other attractions so that he can have some positive experiences during what is sure to be a difficult time for all of us – we are trying to do everything in our power to minimize the impact that Luca’s difficulties will have on Logan, and are working are to strengthen his support net.

Knowing what to expect, and trying to account for a lot of unknowns, we know need to ask our friends, family, and community at large for help.

Since we are hoping for this to reach a bit beyond our small circle, we thought we would include a little bit about ourselves to help people feel comfortable with contributing.

Ashley has worked in Early Childhood Education for the last 11 years, and she currently heads up an afterhours childcare program at a local community college that aims to allow parents to return to school. The program also aims to connect low-income students with other resources, removing obstacles and in turn, helping them to improve their skills and better their future. Ashley has been diligently working on her master’s degree in early childhood education, with a concentration on faculty prep so that she can begin teaching the next generation of ECE teachers. She will be wrapping up her accelerated program in the next couple of months.

Adam works in IT, as a System Admin and for the last several years, he has been a volunteer with the local Emergency Management Agency. He started on the Search and Rescue Team, eventually adding other tasks and taking a leadership role on the Operations Team. Adam is also taking classes with the eventual goal of being accepted into the nursing program. Unfortunately, knowing the demands of Luca’s conditions, Adam will be stepping away from the EMA for the time being, with hopes of returning in the future.

We are both loving and involved parents for our son Logan. He is a very active 3-year-old, who is fully in the swing of his “threenager” period. He loves trail running with Dad, playing, and firetrucks. Logan always tells us he wants to drive a “firetruck of ambulance and help people” when he is older. In the meantime, he loves animals, music and reading and doing art projects with Mom. He is going to lose his mind when we eventually get him to the Shedd Aquarium.