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BabyAmour

BabyAmour

Male / 2 years & 11 months

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

Hello! My son is ³³ months & not speaking! At the turn of 1yr old he was saying around or little less than 10 words! All of the sudden he started sucking his lip & stopped talking altogether.. We thought it was bc he sucked his lip but as time went on he still isn't talking! He babbles more than anything . I need help! My eldest son didn't talk as well until he was 3yr old.. I'm thinking he's following his footsteps but I'm really not sure bc my youngest son do other things that Hannover been done! As far as playing on his poop occasionally amongst other things.. He cries for absolutely everything he wants and points to everything! I'm not a big talker & his father was recently killed please help

Jaxson & Raven Deala

Jaxson & Raven Deala

Other / 8 years & 2 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.

Speech Therapy started

Beau-Bo

Beau-Bo

Male / 2 years & 3 months

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.

Speech Therapy started at 1 year & 0 months

Mr. Moo

Mr. Moo

Male / 1 year & 8 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.

K Bear

K Bear

Male / 2 years & 7 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.

Speech Therapy started at 2 years & 0 months

Xam

Xam

Male / 3 years & 9 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.

Speech Therpay started at 0 years & 6 months

MyPerfectGirl

MyPerfectGirl

Female / 3 years & 9 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).

Speech Therapy started at 1 year & 0 months

HankStrong

HankStrong

Male / 6 years & 7 months

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

Hank was born in 2015. The (facebook) world was waiting as family and friends literally across the globe watched for the first picture. His birth was uneventful. Great APGARs and no problems. Our real story starts in August of 2015. Hank had failed his newborn hearing tests and his Audiology referrals had failed too. We had an ABR done and determined that Hank had total hearing loss in his left ear. She was really concerned because he had a small head and we had no family history of hearing loss.

Roro

Roro

Male / 4 years & 3 months

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

Ronan is non verbal. He did develop some speech around 2 and then promptly lost it all. He’s always been physically way ahead so we tended to get ignored about concerns but have finally been able to get a diagnosis and therapy.

LittleBear

LittleBear

Female / 4 years

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

My child (last of 4) cried a lot. She was the epitome of colic. I exclusively breastfed her and constantly held her. I assumed her physical delays and speech delays were a result of the catering. It wasn't until we noticed her feet dragging a little that we realized we should have her evaluated. The physical therapist explained hypotonia/low muscle tone to us. Sadly, no one explained that it would be lifelong and the other delays that often come with it.

Speech Therapy started at 2 years & 0 months

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