The Bandemer Family

Scroll down to see updates as the Bandemer family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Michael and I met at a summer program when we were 17 and have been together ever since.  We went to college together, got married, and Michael supported me through law school, working as a high school math teacher.  After law school, I began working in a non-profit that provides free legal services to low-income Arkansans and have worked there since.  After a few years, Michael paused his teaching career to go back to school and pursue his Ph.D. in Astrophysics beginning in fall 2023, and we decided that it was a good time to grow our family.  We learned we were pregnant in July 2023 and were overjoyed.  We named him, "Owen."  

Unfortunately, at our anatomy scan in November 2023, we learned that Owen had Congenital Diaphragmatic Hernia.  We were devastated but determined to learn our options.  Our home Maternal Fetal Medicine doctor couldn't determine the severity of Owen's CDH, so he recommended that we seek further evaluation in Houston at Memorial Hermann Hospital.  We loaded up and went through three days of evals and tests in December 2023.  Unfortunately, we learned there that Owen's left-sided CDH was severe, with a 23% Observed/Expected Lung to Head Ration (O/E LHR).  At our home hospital in Northwest Arkansas, he would have had very little chance of survival.  However, the doctors at Memorial Hermann assured us that, if we sought care there and underwent FETO surgery, his chances were much higher.  We would need to move to Houston for FETO surgery at 27 weeks and and stay until Owen was released from the hospital---about 6-7 months total.  Because we were seeking FETO surgery, Michael would have to stay with me 24/7, and we would be required to stay within 30 minutes of the hospital at all times.  Still, that hope of giving Owen the best chance of a long, healthy, and happy life was enough to make us take that leap.  Just 3 weeks later, we packed up and moved to Houston.  

On January 4, 2024, the doctors at Memorial Hermann were able to complete the first part of the FETO procedure after a failed attempt the day before.  On our weekly ultrasounds and since, his lungs have steadily grown in size.  Our little overachiever's latest numbers show a whopping 86-92% O/E LHR as of January 30th, and his post-surgery MRI shows a similarly optimistic 105% Observed/Expected Total Lung Volume (O/E TLV)!  His care team say that there's been few cases showing a response as robust as his and that they are very excited about his response, so we are very encouraged!  Even to lay people like ourselves, it is incredible seeing the difference in his ultrasound pictures pre- and post-FETO.

Still, this was not an easy move for us.  I'd never lived outside of Arkansas, and the vast majority of our family are back there or (for Michael) in Chicago.  It was important to us that we be able to bring our two dogs (Laura and Luke) and cat (Legolas) with us to Houston.  We also wanted to make sure we had a kitchen so that I could have access to healthy foods that meet my dietary needs and separate rooms so that I could continue working remotely while Michael attended his graduate classes, held office hours for his students, etc.  So, we rented a pet-friendly but cheap apartment just 10 minutes from the hospital.  Seeing Owen's incredible FETO response has made this major sacrifice well worth our time and savings, but our savings can only get us so far.  As most non-profit employees/grad students, we are not wealthy, and we have a mortgage for a home we would very much like to return to and raise Owen in.  The monthly grants from the Eden Calhoun Charitable Fund will help us tremendously in paying for our apartment, utilities, increased food costs, etc., that all come from this huge move, until we are finally able to take Owen home.  Thank you for your support!

Update 2/21/24

Shortly after our initial writing, on February 3rd, I started having contractions and was admitted to Children's Hermann Memorial Hospital.  We stayed over the weekend for monitoring, where they discovered some new concerning issues: ascites (fluid in his chest) and thinning of the ductal arteriosus (a heart vessel).  They believed that these may be related to a medication that they were giving me to stop contractions and/or to his incredible response to the FETO surgery and essentially over-full lungs.  Based on these new concerns, my contractions, and that Owen had already benefited so much from FETO , our doctors decided to take out his balloon early on February 5th (at 32 weeks exactly).  The doctors hoped at that point that Owen would get another few days in-utero before meeting us.

As of writing, we are currently 34 weeks, 2 days, and still pregnant!  Since surgery, I have remained in the hospital for monitoring, contractions have largely stabilized, Owen's ascites and thinning of the ductal arteriosus have both fully resolved, and he has continued to grow (to now an estimated whopping 5lbs, 6oz).  His lungs even after the expected post-balloon removal deflation still show an amazing response to the FETO---up from 23% Observed/Expected Lung to Head Ratio (O/E LHR) at diagnosis to 58%!  The plan is for us to try to make it to term and then schedule delivery at 37/38 weeks.  But, at this point, based on the huge improvement we've seen, we know that we made the right choice in bringing Owen to Houston and seeking FETO, even if he arrives a little earlier than planned.

Update 3/2/24

Our EDD is April 1st, but we are anticipating a c-section to be scheduled for/around week 38 (the week of March 18th).  We got some cute new ultrasound pics last week.  Sharing a 3D one that turned out well!

Update 3/25/24

Our son, Owen James Bandemer, was born 3/13/24 following an urgent c-section at 37 weeks, 2 days gestation and 7lbs, 3oz!  We had c-section scheduled for the 18th, but he couldn't wait to see us!

It's been a series of ups and downs since.  His repair surgery was scheduled and delayed twice as he struggled to wean enough down on his vent for his surgeons to feel comfortable proceeding, but he had a successful repair on the 21st, followed by a second surgery to close him up yesterday!  He has already been breathing so much better, and we got to hold him for the first time today!

We have a long road ahead of us, but the future looks bright.  We are extremely thankful for his incredible team at Memorial Hermann/UT, that Owen appears to have benefitted significantly from the FETO surgeries, and for the Eden Calhoun Foundation for helping make the move to seek this great care possible!

Update 4/26/24

We are extremely happy to report that Owen was discharged from the NICU on April 15th!  He progressed incredibly fast to get off the vent, CPAP, high flow, and then the cannula and on to room air as well as from IV to completely oral feeds in just a couple weeks.  We went home with no supports, just 1 month and 2 days after his birth.  Owen has beat every expectation given the severity of his CDH, and we could not be happier to be taking him home to Arkansas this weekend.  We owe a big thank you to the CDH team at Children's Memorial Hermann, the Eden Calhoun Foundation, and the support of our family and friends for getting us here!