Share the first part of Mr. Moo's story for readers on Sleuth! When and why did you start to feel concerned?
My husband and I have two beautiful kiddos, and tried for a few years to conceive another child. After many months of failed attempts, several visits to the doctor, many tests, tracking ovulation and all of that...we believed we couldn't get pregnant, and without explanation. The first two were very quickly conceived so we were left scratching our heads. We stopped using birth control of any kind and just decided to let whatever happen... happen. Fast forward NINE YEARS, we were going out of town and I wasn't feeling quite right. I felt pregnant, and sick. I had felt this way many times before and taken many pregnancy tests only for them to come back negative. I don't know what made me take the test, but I did, and wouldn't you know - I was pregnant! Mr. Moo was a healthy baby, or at least that's what the sonographer told us. I had my 20 week scan done at the peak of the pandemic, so it wasn't routine. I couldn't see the baby at all because of the room we were in, and by some fortunate twist my husband was allowed to be there (we've read many stories of partners not being allowed in.) I just remember the scan taking forever, well over an hour. To top it off, the sonogram was really uncomfortable. The tech was pushing really hard and I didn't know why, I just wanted to know our baby was healthy and be able to leave. When it was finally over, we walked out with a "Congratulations! Everything looks great, you have a very healthy baby boy!" Two days later, we received a phone call. It was the genetics office calling because they saw "something concerning" and wanted us to have another ultrasound, at a different facility, with special doctors. They wanted to do a genetic workup, and "discuss our options." I finally asked, "Do you know what you're looking for?" "Oh, I'm sorry!" the nurse replied, "A cleft lip and possibly a cleft palate." The news felt like it stopped time. Then the questions came. Mostly, what did we do wrong? What does repair look like? Quality of life? Was their co-conditions? It was like a flood. We just had so many questions. We did the genetic workup, and we were told there was no reason they could see that if Mr. Moo did in fact have a cleft - they had no idea what caused it. It just happened, and long before I even knew I was pregnant. We then were taken back to a room with a sonogram tech, and we had a level 2 sonogram that was reviewed by a doctor, and she and the genetics team, and cleft team came into the room to confirm the diagnosis. The baby for sure had a unilateral cleft, but we wouldn't know about the palate until he was born. Mr. Moo was born with an incomplete bilateral cleft lip and palate.
Share the first part of C.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son (nicknamed C.) is a sensory seeker. He's very active. At 18 months, he was constantly moving and doing a lot of physical activities that I didn't see other kids his age do. He also had an enormous amount of trouble self-soothing at night to go to sleep. He was having trouble going from a highly aroused state to a calm, relaxed state where he could fall asleep. We tried sleep training. We tried to do all the typical things that people tell you to do at that age. None of it worked. I just felt like something was off. Like there was something else going on. And when he would wake up in the middle of the night, which a lot of kids that age still do, he just couldn't go back to sleep. He was in a highly vigilant state, wide awake. It was at 18 months that I first mentioned this to his pediatrician. She said, “Well, his nervous system is still maturing. Let's see what happens”. As the months went on, and he started to walk, we noticed that it was like he had no sense of where he was. And then feeding challenges started: he was a really good eater until he wasn't. It was very dramatic. We felt like there might have been some sensory-related stuff going on with either what we were putting in his mouth or what he was seeing. We still struggle with feeding. I mean, it's gotten better. But picky eating was a big indicator of his condition. Then there was the activity level and the lack of focus. C. had a hard time staying focused on one activity. My son was born extremely premature at 24 weeks. Not everybody knows that 24 weeks is the line of viability. He was literally four days after the line. It was a very traumatic birth for him and also a traumatic labor for me. He was born weighing 705 grams. I'll tell you why I say it in “grams.” Because when they are born that early, every gram matters. They consider your probability of surviving partly based on the number of grams you weigh at birth. After he was born, all the nurses kept coming into the recovery room saying, “Oh my! He's 705 grams! Isn't that amazing?” There was like this celebration. He was a little bigger than normal for 24 weeks, but 705 grams is actually one pound and nine ounces. He was tiny. He fit in the palm of my hand. He was very, very small. He spent about five months in the NICU, and it was a very complicated NICU journey for him. Every child in the NICU has their own story. He was challenged with a host of medical issues that almost claimed his life, and also were potentially going to impact his development. When we came out of the NICU we were linked with Strong Start, which is Washington D.C.’s version of early intervention. We started Strong Start at about four months of age, if we correct his age for his premature birth, or eight months old from birth. We were working on some very basic things around gross motor skills, making sure he was moving his head right, that he was making eye contact, some of those typical infant developmental milestones. From the beginning, I had a sense of vigilance around potential delays in his development. In that respect, I think my story might be a little bit different than most families. I already had a heightened awareness that things were probably not going to be typical. The challenges that I had were really the struggles with the system. We knew C. was going to need a lot of therapy. We knew that he was potentially going to be diagnosed with a host of medical conditions that we couldn't predict in his early infant years. I was very proactive about it. But it was still very, very challenging to get the right services, to know who the right people were to talk to, to get coverage from insurance. I always tell people who have questions about what it is like to have a child who was born early or has special needs: this is all really hard. You have the typical challenges of raising an infant. And then you also are a medical coordinator, you’re an insurance advocate, and you're an expert at X, Y and Z diagnosis. You have a host of different hats that you have to put on every single day. The system is not always cut out to support you, right? It's almost the opposite. There are some days where I wake up feeling, “Okay, I'm in fight mode. Let's go!” I have to fight to get through the day, to be able to accomplish the things that my son needs in order to continue to develop and to thrive. That’s our overarching experience. He is now three years and seven months old. When you're born early, they use “corrected age” (based on the date you should have been born, so to speak, if you came to full term at 40 weeks) versus actual age for the first two years of life, because there is a developmental lag. The medical and school systems assume that by the time you are two years old, the child should have caught up, unless there's a major medical issue. Then after two years, you use only on the actual birthday so to speak. So he's actually three years and seven months from his day of birth.
Hydrocephalus diagnosed at 0 years & 0 months