Otto's Story

The day we found out about being pregnant was the best day for us. We were so happy and excited. We went to all the appointments and changed our diets and routines for what was best for our baby. Around November, our OBGYN referred us to a level two sonogram and told us all 35+ year old women need that sonogram. We went twice and had two different sonograms. After that, we were referred to a specialized OBGYN and had another very in-depth sonogram and an MRI. This whole time we were not told what was wrong or why we were needing to go through all this. After the MRI on February 27, 2025, we finally had an appointment with the specialized doctor, and they told us very heartbreaking news that our son had Alobar Holoprosencephaly, which is the most severe level. Holoprosencephaly is a severe brain defect where the brain fails to separate into two hemispheres. It can also cause significant facial and skull abnormalities. As difficult as it was to hear that, the doctors then told us we should abort the pregnancy, that he would not live after being delivered, and if he did, it wouldn't be long and to prepare to do "comfort care," which is to make me as comfortable as possible while they wait for me to pass. We were devastated and heartbroken. After all the appointments that day with different doctors, we cried our hearts out. We started canceling baby showers and letting our families know about Otto. For over two weeks, we lived with the devastating knowledge that our son would not make it after he was born. We had another appointment with two different doctors that specialize in birth defects, and they said they didn't see what the first doctor saw and they have good hopes that he would survive, but what happens after is still unsure as it could go either way. We kept going to the appointments at the specialized doctor, and they kept really close tabs on all of his growth while in the womb. As per his condition, his head started growing too fast and it was getting close to 10 cm. At 35 weeks, the doctors told us that we had two choices: to induce and have me naturally at 35 weeks or wait till 40 weeks and have a c-section, which had a lot of risks for both mom and baby. We decided to induce since it had fewer complications involved. So we started the inducing process on March 31, 2025. It took a while to get all the circumstances right for him to come into the world, and mom almost had to have a c-section. But on April 2, 2025, at 4:17 am, Otto was brought into this world. He had to be on a CPAP machine for 4 days and an NG-tube while he was in the NICU. All the nurses were really nice and took really good care of him, although we think he just wanted mom and dad. He had a lot of different doctors and care teams, and they all worked really closely together, but since his condition is kind of rare, they really didn't know much about it. And after spending 19 days in the NICU, he was finally able to come home after overcoming all the obstacles. He was being bottle-fed and doing really, really well. He had a team of new doctors that worked closely together and watched all his growth and progress. As time went on, his endocrinologist started getting worried about how fast his head was growing and referred us to see a pediatric neurology surgeon. We went and saw them in August, and they told us if he started throwing up a lot and got sick to bring him straight to the hospital. Over the next few weeks, he started getting really sick and had a hard time keeping his food down. So we took him to the ER, and his neurosurgeon decided he needed to have Choroid Plexus Cauterization (CPC) brain surgery, in which they open his skull, release some fluid, and cauterize parts that produce brain fluid so his head won't keep growing too fast. So on September 5th, he had brain surgery. It went really well, and he was able to come home the next day. He healed really well. After a bit, he started throwing up again, and they put in an NG-tube again. After many ER visits and many stays in the hospital, they finally realized he cannot handle a lot of formula at once. His doctors decided he needed to have a G-tube. So on October 17th, he had the G-tube surgery that went well. He was just in the hospital for having fluid in his hip that they had to drain, and we are still waiting on the results of that.