Hatties story❤️
Hi everyone I thought I would introduce my Hattie! On 08/12/2024 I went into maternity assessment at 38 weeks for reduced movements and they popped me on the monitor to find a slow heartbeat then it stopped so I was taken for an emergency c section, she was born not breathings with meconium in her waters and was intubated straight away. Once she was taken to the NICU they popped her on the brain wave monitor and picked up seizures so was immediately put on cooling and transferred from Leeds to Hull as this was the closest ICU bed. During her time on cooling she suffered from sepsis, hyperglycaemia, seizures and blood clotting problems. After the 72 hours of cooling the MRI took place which was completely clear and showed no indication of any potential or previous brain damage. The only things that were impacted was her kidneys and liver which she is having treatment for and will do for the next few months at least.
The HIE was caused by me having undiagnosed velametous cord insertion, this also caused her to weigh the same at a 33 week old baby at full term.
She spent 10 days in the nicu and came home for 2 days then was back in peads for another week for her kidneys.
What I would love to know is what can I expect with her development with her HIE only being grade 1 and the MRI being clear?
Thankyou for reading I hope everyone and there babies are doing well❤️
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My little girl had grade 1 HIE and a clear mri, so far the only issue with development is her refusing to walk at 18 months but she is a bum shuffler so apparently are naturally late walkers. Her speech is fantastic and has met everything else on time!
I hope all goes well for her upcoming treatments, she’s gorgeous ❤️ xx
Thankyou for your reply! I hope your daughter she continues to do well ❤️
Aww. My twins are Nicu babies too. Seeing your little one with the cords attached brought tears to my eyes and took me back. Look at her now. She looks so alert, happy, and healthy.
I don’t know anything about the condition she has, but online it says most babies make full recovery without any lasting effects.
Talk to her and teach her as much as possible.
nicu babies are so special, they won’t remember a thing but we will remember everything! She is so alert and amazing and I do hope she makes the full recovery and has a healthy life 😊
Such a strong baby fighter ❤️
Evening . My little one is 3 he was diagnosed with moderate HIE. Development wise he is doing amazing But emotions he struggles with but that is normal for his age. I'm keeping an eye on it. He can spell his own name and knows all the letters of the alphabet. He has a loss of hearing in one ear but that since birth. He is cheeky little monkey 🐒 x
This sounds so similar to my son.
He was born, not breathing, then went down to like 0.4 blood sugar.
They did all sorts of tests, and mris, they found he was born without his pituitary gland, so we got a diagnosis there and put in treatment.
He was always delayed at first. The doctors just said oh its from the brain damage he got. When he was born, he will get there etc but my partner and I knew there was something else so went to get him evaluated and got diagnosed with global developmental delay at 2 years and autism at 3.
My son is 15 years old now and is going really well. Yes, he is still quite delayed and has troubles sometimes, but he is happy and has many interests lobes school and just being a teen.
My daughter just turned 1. She was born with moderate HIE and she had other medical complications that allowed her to be in the NICU for 22 days. I was very worried and started Early Intervention when she was about 3 months old. She progressed so well and is crawling, standing, and taking a few steps while holding my hand. What really helped me was the Early intervention program I was able to get for my daughter. We worked really hard to get her to reach her milestones. I also joined a group on facebook and instagram called @HopeforHIE they taught me a lot about my daughters needs and what to look for. I will you and your family the best on this journey.
what type of early intervention did you do?
in NYC we have a program called Hand in Hand Early intervention. They offer physical therapy, occupational therapy, and speech therapy. My daughter was evaluated and was offered physical and occupational therapy. Since she’s so young they didn’t believe she needs speech therapy. This program accepts children from birth- 3 years old.
That sounds similar to what the NHS offers here ☺️ always checking to see if there's any extra therapies I could be accessing for my daughter
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