During February Heart Month, we recognize the littlest patients as well.
Jacob Lee Roy Curtis of Manchester will be two years old in March. Here is Jacob’s heart story, as told by his mom, Gelian Dighton Curtis.
“Jacob Lee Roy Curtis was born on March 28, 2022. He was diagnosed at 20 weeks gestation with Hypoplastic Right Heart Syndrome. This is where the right side of his heart was not formed. This is a birth defect of the heart where the valve that controls blood flow from the right upper chamber of the heart to the right lower chamber doesn’t form at all, also known as Tricuspid Artresia. This also means he has a lower oxygen level than “healthy babies”.
We had several tests that included Echocardiograms, done while I was pregnant, at the University of Iowa. We met with several doctors and cardiologists. We were terrified because we did not know the outcome or what to expect.
When Jacob was born, we were told he would not be crying and would be blue. He beat the odds and came out screaming. We stayed at the University of Iowa Children’s Hospital for five days before coming home. We were told he would have his first procedure at just days old and were told we would be in the hospital for awhile before bringing him home, but again he beat the odds. We were able to come home and be a family of four. Big sister Leila was so excited to meet her little brother.
We were able to be home for six weeks before Jacob had his first ambulance ride back down to the U. That night was any normal night. We were getting Jacob ready for bed. I had purchased the owlet sock that he wore every night. This monitors heart rate, sleep, and oxygen levels. When I looked at the levels, his O2 level was reading 68, I looked at him and he was not blue, had no signs of difficulty breathing. I readjusted the monitor and waited. It still read 68. I looked at my husband, Billy, and said, “I am not comfortable with this”. I loaded him up and took him to Regional Medical Center. In the ER, he was still reading 68. We were transported by ambulance to the U and that next day we received the news that Jacob would have his first heart surgery.
Even though we knew he would eventually have surgery, we were still shocked. He had his first heart surgery on May 9th. They placed a shunt to act as a bypass to help with the blood flow to his lungs. He was so little at 6 weeks old, but he was a fighter and surgery went very well. That was the hardest Mother’s Day, I was having to split my time between my two kids. We spent 19 days in the hospital before coming home.
Again, big sister was so excited to see us all back together again.
At home, it was not easy. It was constant weight checks 3 + times a week, constant 02 levels checks with our home pulse ox machine, writing down every feeding, home care visits, and visits every 2-4 weeks at the University Children’s Hospital, with bare minimum sleep. We both had to eventually go back to work, so Grandma came to help take care of the kids since we did not want to put Jacob in daycare.
Jacob grew and we only had one more visit to the U for testing positive for COVID, but luckily that was a quick one night visit and he was again a fighter and recovered well.
We knew surgery was in the near future when his 02 levels went from high 80’s to as low as 70.
He was able to make it six months before his 2nd open heart surgery. Surgery for the Glenn procedure was on November 1st. The Glenn procedure sends blood from the upper body directly to the lungs. This way, the single ventricle only has to pump blood to the body (and not to the lungs), so it doesn’t have to work as hard. This procedure lasted about 6 hours and it was so hard.
Jacob beat the odds another time and only spent four days at the U. Life after Glenn has been amazing. We are able to do more as a family. We can not be more proud of him. He truly is climbing every mountain that is thrown in front of him.
Now, Jacob is doing well. He will be 2 in March. He’s running around being a typical little boy. You would never know he’s had 2 heart surgeries by his energy level. He definitely wears Mom and Dad out!
Jacob goes back to the University in April for a 6 month follow up. We will plan a heart cath at that visit and from there, we will see when his 3rd surgery will be. We hope to do this a little closer to the age of 3.
We went to Lambert Elementary for the Jump Rope for Heart assembly and plan to be active in that with the school as well!
CHD is not funded enough and we are wanting to raise awareness as much as we can. We have decided as a family that every year we are going to donate to the CHD foundation to raise awareness and help with research.”
photos courtesy of Jacob’s family
