Meet Theodore

Pregnancy

Our story with Theo started at his 20 week gestation scan on July 31st, 2024. We were so excited for our gender confirmation after taking a blood Natera test earlier in my pregnancy. We were over the moon confirming we were having a baby boy. During our 20 week ultrasound, the technician was having trouble measuring his heart due to his positioning. After that appointment, we scheduled a follow up ultrasound for August 20th. At that scan, the technician wasn’t able to measure the left half of his heart due to positioning again. At that point, they referred us to Maternal Medicine, located at our home hospital, Mount Carmel Grove City, for a level 2 ultrasound, scheduled for September 4th. There are a couple regrets I have that day. My husband just began a new job and I didn’t want him to miss work, so I told him, what I thought would be, a normal ultrasound just to get what they couldn’t at the last 2 regular ultrasounds, and told him to work instead of accompanying me. Second, I didn’t have the rest of the day off for this appointment, as I asked to take a longer lunch break. Once the scan was over, the technician said she would be back after talking with the doctor, which to my knowledge is normal as they did that with my last 2 scans. As each minute passed, I became increasingly anxious. I remember texting my directors (I work in Child Care), and a group text with my mom and sister, about how scared and anxious I was, as 20 minutes passed before the technician returned with the doctor. When they returned, they pulled up his ultrasound for me to see on the TV. The doctor, Dr. Lang, explained that my son had a large Intramuscular Ventricular Septal Defect (VSD). They assured me that they aren’t sure why these things happen, and that I did nothing wrong. I felt an immense wave of emotions, mostly fear. I returned to work a mess of emotions, and cried in my director’s arms, out of sorrow and fear of what the future held for my son.

Dr Lang referred us to The Fetal Center at Nationwide Children’s Hospital, with Dr. Karen Texter. On October 2nd, we had our first fetal echocardiogram with Dr. Texter. Our meeting with her after the echo revealed that our son not only had the large VSD, but also had aortic valve stenosis and hypoplastic transverse arch with coarctation of the aorta. The news of more issues with his heart was devastating my husband and I. On October 30th, we went back to the Fetal Center for a follow up echocardiogram , our last one before our December 16th due date. The appointment came with no new news about Theo’s heart, and a conference about Theo’s birth plan. In this conference, we discussed a referral to my OBGYN for an induction, to better prepare the team. After Theo’s birth, he would be transported immediately to NCH for medical intervention. On November 9th, I went into preterm labor at 34 weeks 5 days. My husband and I stayed at Mount Carmel Grove City until November 11th, so that I may receive steroid shots to prepare Theo’s lungs, and to stop the progression of labor, as they didn’t want to put stress on his heart. I was sent home with medication to not go back into labor prior to my follow up with Maternal Medicine on November 18th.

Birth and Surgery

On November 19th, 36 weeks 1 day, I went back into labor (at 11 pm). We returned to Mount Carmel, and their wonderful nursing staff contacted NCH to inform the care team. On November 20th, at 4pm, Theodore Robert Scott was born, 6lbs 15oz, 20.4 in. After an hour of skin to skin, Theo was taken to the NICU, to await transport to NCH CTICU.

At 5 days old on November 25th, Dr. Galantowicz performed a Hybrid Procedure. He inserted a stent into the patent ductus arteriosus, and banded both sides of the pulmonary artery. The procedure was quick and he recovered very well. Over the next 46 days, we went through a whirlwind of emotions as Theo recovered in the CTICU. Although Theo’s procedure went well, we had several setbacks due to his O2 levels, blood pressure, NEC (necrotizing enterocolitis), ROTA virus, weight gain issues, and a 2 weeks NPO period where he had an NJ tube due to aspiration concerns. After 51 days in the hospital, 27 pokes, 47 IV infusions, 44 Scans, 9 Echos, spending his first 3 holidays (Thanksgiving, Christmas, and New Year’s) in the hospital, our sweet boy came home at 6 weeks old. We were overjoyed to finally have our little family together at home. The transition from hospital to home did come with some extra steps, as the Single Ventricle Team sent us home with an O2 monitor, a scale, and an app to send daily videos as well as daily vitals to ensure Theo’s was growing well, and his heart was still tolerating the PDA Stent and his O2 levels stayed in his safe range of 75-85. Although weight gain was a struggle at first, he was thriving at home. As I returned to work a few short days after his homecoming, Theo had his first day of school in our infant classroom (he has a very large fan club). My coworkers, directors, and even my students were overjoyed to finally meet our sweet boy. 

Surgery 2 and Beyond

On February 20th, at 3 months old, during our nightly O2 vital read we were alarmed at Theo’s extremely low O2 level of 58. We immediately called the cardiologist on call and rushed him to the ER at NCH. After a few hours in the ER, Theo was admitted back to the CTICU on oxygen. 2 weeks later, on March 6th, Theo went under his large open heart surgery, to remove the PDA Stent, and reconstruct his aortic arch, and open his aortic valve. After around 4 hours he returned to the CTICU. The next few days of his post surgical recovery were rough, as he was in great pain and had some delirium. On March 13th, 7 days after his open heart surgery, Theo came home again. He struggled the first week or so with his pain level, but eventually settled back into our normal routine. After 30 days, he was able to return to school! His follow-up echocardiograms have shown no scarring of the aortic arch, and no progression of the disease in the aortic valve. As of July 25th, he was 15 lbs 5.9 oz. Low for 8 months, but a great deal of progress nonetheless, and with great praise from his doctors. Theo is currently thriving and is the happiest baby. He attends physical therapy, as he was diagnosed with torticollis after his first hospital discharge, and works with NCH Physical Therapy, as well as Help Me Grow, to help with the torticolis and ensure he is working on his gross motor development. Theo is currently trying to crawl, and is sitting up on his own with little to no assistance for longer periods. He is extremely food motivated, his favorite current foods are pancakes, blueberries, and teething crackers.

We continue to monitor Theo’s aortic valve with echocardiograms at The Heart Center. We are extremely grateful for the amazing team at Nationwide Children’s Hospital. From his doctors, nurses, and pcas in the CTICU, his care team at The Heart Center, his surgical team, technicians, lactation support, and social work team, we thank you all for care for and continuing to provide the best care for Theo. 

Theo will be 9 months next week, and we plan to participate in the Columbus Congenital Heart Walk in September!