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Moose

Moose

Male / 3 years & 4 months

Share the first part of Moose's story for readers on Sleuth! When and why did you start to feel concerned?

Had an anaphylactic reaction to peanut powder introduction at 9 months

Jaxson & Raven Deala

Jaxson & Raven Deala

Other / 7 years & 11 months

Share the first part of Jaxson & Raven Deala's story for readers on Sleuth! When and why did you start to feel concerned?

Back in 2013 when I (Abby) was 20 weeks pregnant with our son Jaxson, we found out that he would be born with a Unilateral Left Cleft Lip and Complete Left Cleft Palate. This cleft was identical to the one my husband (Kristopher) was born with. From that point on we had to change doctors, hospitals, and make a plan for after Jaxson was born. After Jaxson was born he had breathing complications and this resulted in a 4 week stay in the NICU. Raven, was born in September of 2018. We had no idea that she had any medical complications until she was born and unable to breathe on her own. Immediately follow delivery she was rushed into the NICU. After being evaluated in the NICU it was determined that she had a recessed jaw, a small airway, and a bilateral soft cleft palate and would be later diagnosed with Pierre Robin Sequence. With no preexisting PRS within our family DNA testing along with several other tests we completed.

Beau-Bo

Beau-Bo

Male / 2 years

Share the first part of Beau-Bo's story for readers on Sleuth! When and why did you start to feel concerned?

My husband was born with a cleft lip and palate and when we decided it was time to expand our family we always knew our chances of conceiving a child with the same condition were going to be higher. Our 20 week anatomy scans were always done by doctors (not technicians) so they would be able to conduct a more thorough exam and diagnosis whether or not the child would have a cleft right away. It wasn't until our third child, Beau that we were given the news our son would be born with a bilateral cleft lip and palate. I remember leaving that appointment and I couldn't stop crying. Honestly, I spent most of the remaining 20 weeks of the pregnancy finding myself crying on and off so worried about what Beau had in store for him. Thankfully I had my husband to rely on. His experience of what he had gone through (surgery, bullying, speech, etc.) helped me to better prepare mentally for what Beau would have to experience. Each cleft journey is so unique and even to this day I still find myself concerned for what lies ahead for Beau in his development through speech, dental procecures and future surgeries. Like with any child, I don't think you ever stop worrying about the future but we do our best to prepare and take each day of his journey one step at a time.

Mr. Moo

Mr. Moo

Male / 1 year & 5 months

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.

Easton

Easton

Male / 3 years & 9 months

Share the first part of Easton's story for readers on Sleuth! When and why did you start to feel concerned?

Easton's story started before he was born. At about 28 weeks pregnant, I found myself very sick in the ICU with an infection, pneumonia, and relentless fevers. At the time I was blissfully unaware of what cytomegalovirus (CMV) was. However after weeks of testing, I was diagnosis with CMV and told that there was a chance that my child would be born with a congenital form of CMV as it could pass through the placenta. However, I was told to not worry and that it was unlikely to cause issues. This was far from true for us and so many. A few months later, Easton was born! At 36 weeks and 5lbs, he was doing well but had issues from the get go. He did test positive for CMV at birth but I was again reassured that he would be fine, and there was nothing to do for it. He was jaundice at birth and didn't as eat much as I felt he should. Every time he ate he would spill so much milk around his mouth that it soaked his shirt and mine. He sounded like he was gargling milk when he drank, almost like he was drowning. It was so concerning to me, but it was brushed off by doctors very frequently. I took him to his pediatrician, lactation consultants, chiropractors... I was desperate for help, He cried all the time, slept restlessly, and developed thrush. He was diagnosed failure to thrive at two months old weighing just 6lbs 7oz. This is when we were able to move to a larger children's hospital and start on this journey!

K Bear

K Bear

Male / 2 years & 4 months

Share the first part of K Bear's story for readers on Sleuth! When and why did you start to feel concerned?

When K Bear was 6 months old we took him to a Christmas party with lots of similar aged babies. They were all rolling and some were even trying to crawl. I felt alarm bells ringing but friends and family reassured me that boys take longer to develop and that K Bear was just lazy but we felt uneasy. We put the delayed development down to lack of sleep and almost zero time spend doing tummy time as he’d just scream. At his 9 month check-up, the paediatrician was concerned that he rarely rolled and still couldn’t sit unsupported. He recommended physiotherapy and reassured us K Bear would only need two or three sessions. Now looking back at photos before this check-up, K Bear was starting to sit unassisted but had slowly lost the ability in the run up to spasms starting. He’s also not smiling in most of the photos around that time which we now know are tell-tale signs of IS. A few days after this appointment K Bear made a strange movement, a little like he was losing his balance and putting his arms and legs out to steady himself. His arms and legs would fling outwards like he was falling forwards. He had an ear infection at the time so I thought it was due to that, however, I sent an email to the paediatrician describing the movement the best I could. He told me not to worry and that it sounded like a normal baby movement. A couple of weeks went by and K Bear was still doing this strange movement a few times a day. We had started referring to it as ‘jumping’ or ‘falling’. My father-in-law was very concerned when he saw it, but I told him the paediatrician said it was normal. He wasn’t convinced. We finally got footage of the spasms and sent it to the paediatrician on a Saturday, two and a half weeks after we first saw one. He replied later that day which we thought was strange as it was the weekend. He told us he’d forwarded it to a neurologist and the lump in our stomachs expanded. We were terrified.

Morgan

Morgan

Female / 3 years

Share the first part of Morgan's story for readers on Sleuth! When and why did you start to feel concerned?

After my 20 week anatomy scan I went to a specialist in high risk pregnancies. I was tested for CMV after my daughter had an echogenic bowel. I told that CMV was nothing to worry about after my blood test cane back as a primary infection. The high risk doctor said my daughter would be just fine and I was referred back to my primary doctor who said the same thing, not knowing any different. Due to my health problems during pregnancy, such as blood clots in my lungs and having Ehlers-Danlos Syndrome, along with my daughter failing a non-stress test very early on, I believe around 25 weeks, my doctor referred my care to a different high risk clinic. At that time, I was very worried. After my first appointment they had a emergency NICU care plan set up so the NICU nurses would be in the room when my daughter was born to do assessments and take her to the NICU of needed.| After my doctor had set up the NICU team with me, I had a NICU tour at 30 weeks. The same day I had an appointment with a team of doctors to explain what to expect for my daughter- they didn’t give a very positive outcome. I had appointments with my doctor, ultrasounds, and multiple non-stress tests weekly from 30-39 weeks and I was worried every time I went in that there would be something wrong and I would be having her that day. I, was told due to her echogenic bowel, my blood clots, and her IUGR., that it would be possible Thankfully I was able to deliver her full term at 39 weeks. As soon as she was born she had lab draws, urine samples, an ultrasound of her head to check for CMV damage, and an ultrasound of her spine since she had a birthmark that is common for spinal cord abnormalities. The ultrasound of her brain came back with cysts, calcification, missing white matter, and a hemorrhage. The spinal ultrasound came back clear. They later confirmed the ultrasound findings of her brain with an MRI. The next day she had her newborn hearing tests and failed it after they did it 3 times before she was discharged at 3 days old. She had to start seeing specialists out-patient right after she was discharged from the hosptial to be able to keep her out of the NICU and come home with me. From the time she was born she has seen many specialists, Morgan has been in and out of the hospital often, and has progressively had more diagnosis added. It can be very stressful at times. I wouldn’t say it has gotten easier, it has just become our new normal in life. It isn’t a shock every-time she has a new diagnosis, gets sick, or her care team adds a new specialist.

Xam

Xam

Male / 3 years & 6 months

Share the first part of Xam's story for readers on Sleuth! When and why did you start to feel concerned?

My pregnancy was fairly typical until my 20 week anatomy scan when they found I had placenta previa and Max had an echogenic bowel so I was referred to an maternal-fetal medicine doctor (MFM) for further testing and monitoring. The placenta previa corrected itself but the MFM doctor did a TORCH panel which did show that I had CMV antibodies so both the MFM and my OBGYN said I had already had CMV (most likely as a child) and everything was fine. Max was born in March 2018. He was 6lbs and 14oz with the sweetest little face. Max was also covered in a petechia rash on his face, shoulders, chest and back. I asked everyone from his OB to the pediatricians to the nurses about it and they all said it was from the traumatic birth, except his birth wasn’t traumatic at all- it was easy. Especially compared to his older brothers birth. Everything was fine until his one month appointment when I was told his head circumference had fallen off the growth chart. I was still told not to worry but Something inside me kept saying something wasn’t right Fast forward 4 months- we had been in and out of the pediatrician for constant feeding issues, extreme crying and tightness/rigidness in all 4 of Max’s limbs. Pediatrician continuously chalked it up to severe reflux as multiple people in our family have it as well- including Max’s big brother. We were referred to a GI who told us he didn’t think it was reflux but to keep his head circumference on our radar as it still hovered anywhere from the 1st-3rd percentile just depending.

G's Son

G's Son

Male / 6 years & 2 months

Share the first part of G's Son's story for readers on Sleuth! When and why did you start to feel concerned?

When my son was newborn (a day or two old) he had what I know believe to be spasms. I videoed it and showed the doctor, and I was told it was startle reflex. Nearly six years down the line, my son has cognitive and language delay and motor stereotypies. He is waiting to be assessed for autism, but nobody seems to be able to put their finger on the cause of his issues. He is very sociable and has great eye contact, and apparently has some traits of autism, but also traits that don’t fit the autism diagnosis. I’ve been treating him biomedically for the last three years, and he is making good progress. He attends mainstream school, with a full-time one-to-one assistant to support him. Obviously I want the best outcome for him, and don’t want to miss anything.

MyPerfectGirl

MyPerfectGirl

Female / 3 years & 6 months

Share the first part of MyPerfectGirl's story for readers on Sleuth! When and why did you start to feel concerned?

During pregnancy I barely felt her move. But scans always showed a healthy baby. At 3 months she was diagnosed with Plagiocephaly (flat head) while in hospital for a respiratory virus. So we were referees to to a neurosurgeon, who said it would correct itself and she was dismissed until 10 months when I emailed photos back to the neurosurgeon of how bad her head had gotten. They called us in for an urgent appointment the next day and she was diagnosed with brachycephaly (her head protruded severely on one side from laying on it all the time) and had to start helmet therapy. Other than that I was worried as she was not rolling or sitting like my first child had, so I’d been taking her to different general practitioners and 3 Physios, but everyone told me she was just lazy and overweight. The hard thing was, no one was linking the flat head to her inability to move. I felt like I was going crazy in this period. Finally, at about 11 months I took her to see an amazing paed listened to me, and as soon as he picked her up he said “she has low muscle tone” and diagnosed hypotonia and the diagnosis process started (genetics, referral for an MRI etc).

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