Meet Karsten…

Check out his amazing story below and those battle wounds on his chest. He is a little stud! This story is to raise awareness for congenital heart defects, where anyone is at risk and many times there is no genetic link to these defects.

At Karsten’s 20 week ultrasound, he was diagnosed with Transposition of the Greater Arteries (TGA) and Coarctation of his Aortic Arch (COA). Jon and Jess were devastated, but they knew it would all be okay because it was “fixable”. Karsten would require open heart surgery within the first couple weeks of life. Two week later, 22 weeks gestation, the perinatologist (high-risk OB), met with Karsten’s parents and did his first ultrasound. He found that the baby had accumulated Hydrops Fetalis and ordered an amniocentesis. A week later, the hydrops progressed to ten times the original measurements and baby Karsten started showing signs of congenital heart failure. At that point, there was nothing the family could do but wait and pray. The results of the amniocentesis showed there were no genetic or chromosomal mutations, further supporting that the baby was going into congenital heart failure. Karsten was too small and sick to be delivered and considered to have zero chance at life.
On a Sunday evening, the couple went into the hospital because they had not felt the baby move for two days. An ultrasound showed that Karsten was hardly registering a heart beat and the family was prepared for their first still birth. The three doctors who came and looked at the ultrasound were all certain it was just a matter of hours until his heart would stop. Jon and Jess were referred to a clinic that could stop the baby’s heart since there was zero chance of life; however, the couple knew it wasn’t their decision to make. Jon and Jess chose to go home and follow up with their doctor the next morning or for labor to start.
The following Monday, the doctors received the results of the baby’s viral panel and it showed that he had the B19 Parvo virus. This is not that same virus that canines get, and it is not associated with the heart. Jess had been exposed to the Fifths Disease Virus (common virus in young children), and it had been passed onto baby. The doctors were able to give Karsten two, separate blood and platelet transfusions through Jess’s belly into his umbilical cord. The first transfusion didn’t help baby, but a week later the second one almost cured him of his hydrops. Jess started to show signs of Mirror syndrome and accumulated three times the amount of amniotic fluid as normal pregnancies, which sent her into preterm labor.
Despite the 10 weeks of hospital bedrest, three trips to labor and delivery and being faced with two possible still births of “Special K”, Karsten was delivered at 36 weeks. He stopped breathing and his heart stopped within the first thirty minutes he was born. He had an emergency Cath Lab procedure hours after birth, and he had his first open heart surgery the following morning. Post surgery his lungs collapsed, causing a longer stay than anticipated. Karsten was also unable to feed from a bottle and came home with an NG (Nasogastric) tube and worked with occupational therapy until he was able to feed from a bottle.
Recently Karsten was diagnosed with vocal cord paralysis which is attributing to breathing issues. He has a swallow study coming up to ensure he is not aspirating food and other foreign particles into his lungs. He also has restricted blood flow to both lungs and it is very possible he is facing another open heart surgery to repair the restrictions. Despite all this little guy has been through, Karsten continues to show those around him to never give up hope and keep on fighting the good fight.