Rhianne – Baby Ella

Tube Weaning

My daughter has a rare gene called CSDE1, which is known to cause infant feeding difficulties. She was tube fed from birth, and at 4 months old I was recommended to Lindsay it has truly been the best recommendation of my daughter’s life.

At the time, my daughter could only tolerate 10ml from a 60ml bottle. I didn’t know if oral feeding would ever be possible, especially because of her genetic condition. She was taking omeprazole, was frequently sick, and could not reach the NHS guideline of 150ml per kg. At best she managed around 135ml per kg, and even then she was still vomiting.

Lindsay was a breath of fresh air. Having experienced the NG tube journey with her own daughter, she understood everything I was going through. She was open, honest, and incredibly supportive. What I loved most about Lindsay is that we just clicked, everything she explained made sense and aligned with my instincts as a parent. I truly believed Ella was being overfed. NHS guidelines follow a typical feeding path, but my daughter has a rare gene and may not follow the same trajectory as a typical baby.

I was extremely nervous and my anxiety peaked at times, but Lindsay was always at the end of the phone to reassure me and guide me. I was initially hesitant to start the process, as I kept thinking Ella wasn’t ready and would drink more when she felt ready. In fact, I waited 5 months before beginning the programme.

At 6 and a half months old, Ella is now officially tube free!

My biggest advice to other parents is to make sure you feel ready. There were many tears from both myself and Ella at the beginning, but Lindsay is a wonderful woman who brings so much positivity, encouragement, and reassurance when it is needed most.

From the bottom of my heart, Lindsay, thank you so much for all of your support. You have given me confidence in my daughter, and I will forever be grateful for our journey.