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Pregnancy choices

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Pregnancy with PKU (classic)

2 replies

Katielouisethomson · 05/07/2025 22:44

Mumma’s and Mumma’s to be your not alone.

My name is Katie, I have had a beautiful baby boy who is now 10 months old, he is happy and healthy and thriving. But it has been on a hell of a journey with having PKU and having an unplanned pregnancy the moment I found out I had a rush of anxiety that I had never felt before. I cried, I doubted myself, I was constantly worried, I felt sick to my stomach and I was told by professionals that its a high risk for the baby to have congenital heart disease 12%; mental retardation 92%; microcephaly 73%; birth weight <2500g 40% and spontaneous abortion 24%. The hospital didn’t like that I had my way of dealing with MY condition of course my unborn baby’s needs will be out first but I know MY body and what I need in order to ensure my baby is healthy not with just having low PHE levels but enough protein to make sure my baby grows. My levels were on target and dropped lower and lower and eventually I took control and managed my levels myself the hospital didn’t know what was best for me or baby at the time I reached my phe level of 200 and for me that was healthy for me and baby an consistently for weeks my baby grew then my levels dropped to 100 and baby stopped growing so I had to up my intake of protein but the lack of support I got from the hospital they were so unsure themselves it wasn’t reassuring giving everything I was going through physically, mentally and emotionally. I had my baby and he is healthy and I proved the staff at the hospital wrong my way did work and that’s because I know MY body and what felt right and what didn’t with evidence that I was doing the right thing for baby to grow as it reflected on scans. To any parents going through this an feeling anxious or alone or you need to vent or you need help. I’m here, I want to make your experience feel less alone and I want support you in your journey or if you have recently been through this and need someone to talk or want to share you experience.

OP posts:
SilverScales · 07/07/2025 17:32

Hi Katie! I'm so glad that you have a healthy baby and that you were determined to do all you could to have the best outcome. The doctors often end up being wrong but there are so many feelings of anxiety in the meantime. Thank you for sharing your story, I'm sure someone out there is in the same situation and will feel hopeful after reading it.

Katielouisethomson · 07/07/2025 20:35

Thankyou for your lovely words! X

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