3 year old Daughter - Quad CP

Hi everyone, I’m hoping to connect with other moms who have been through a similar journey. My daughter, was born on October 14, 2021, through an “crash” emergency c-section after I noticed she wasn’t moving and decided to get checked. It turned out I was experiencing a hemorrhage and placental abruption. The doctors told me if I had waited even ten more minutes, she might not have made it. She had to be resuscitated at birth and spent five long weeks in the NICU fighting for her life. Shortly after, she was diagnosed with Hypoxic-Ischemic Encephalopathy (HIE), which is a lack of oxygen to the brain. At nine months, she was further diagnosed with moderate to severe spastic cerebral palsy. Zaliyah is globally delayed and will most likely be non-verbal. Emotionally, it’s been such a difficult journey—grieving the expectations I had while also learning to navigate this new path with her. It’s been hard to find others who truly understand what this feels like, and I would really love to connect with anyone who has had a similar experience or has a child with cerebral palsy. How have you managed emotionally and practically? I’d love to hear your stories and connect. It’s been a tough 3 years…

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I’m so sorry to hear about everything you are and have been going through. I have a 10 month old boy, and had a fairly traumatic delivery. Following his birth he ended up having multiple seizures and ended up being rushed to a high level children’s hospital where he stayed for two weeks hooked up to endless machines. Turns out he had a stroke at birth impacting basically the entire right side of his brain. He was sedated most of the two weeks and still had anti-seizure meds in his system for just over a month so that has caused delays for milestones but we were pretty sure he would have CP on the one side since the stroke impacted so much, and received the official diagnosis at his 8 month appointment. We we super fortunate that they have hopes he can have the right side try to work to support the left, but I personally have been an emotional wreck these past 10 months.

I find my biggest issue is I want a mom village so badly to have people to connect with about the highs and lows of navigating being a new parent, but I feel like I just mentally spiral being around other babies his age and seeing how behind he is, and the hurdles he has to face. so I just gave up on mom groups and focus on family and physio. Would love to connect with other moms in similar situations ❤️

Hi Tori, Thank you so much for sharing your story and being so open—it means a lot. I’m so sorry to hear about what you and your little one have been through. It sounds like you’ve faced such a challenging journey, and I can truly relate to so many of the emotions you described. It’s incredible how strong our little ones are, but that doesn’t take away how heavy this journey can feel at times. I completely understand the desire for a mom village yet finding it so hard to be around other babies who seem to be hitting milestones effortlessly. I’ve felt that same isolation, and it’s such a mix of grief, love, and resilience. I think it’s amazing that you’re focusing on family and physio—it sounds like you’re doing everything you can to support your son. I’d absolutely love to connect! ☺️💛

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