My baby girl was diagnosed with a Left-sided Congenital Diagphragmatic Hernia (L-CDH) when I was 21 weeks pregnant and our world felt like it had fallen apart. The outcome was very uncertain, and we were told she might not survive. Instead of being born at our local hospital like her sister was, her first 2 weeks were spent in Alder Heys Paediatric Intensive Care Unit, she was on a full tube ventilator, and required life-saving major surgery at 3 days old. during this time she was nourished by IV-lines, that’s nutrients directly into the bloodstream, and a special “long-line” carrying heavier nutrition. When this ‘Long Line’ failed and a siting of a replacement presented significant risk she was started on tiny amounts of breastmilk via nasogastric tube.
This approach, which in fact was preferred by the Alder Hey Paediatric team worked well, and at two weeks old exactly I was finally told I could start attempting to breastfeed her. Initially we struggled with latching issues. She would happily lick and latch on briefly, but then repeatedly slipped off, quickly becoming tired out and needing to stop. She became tired much faster than a “normal” term baby because, well, she has far less lung capacity, was recovering from a major operation, and her body needed to adapt to using the normal set of muscles to breathe once her diaphragm had been repaired. I was growing increasingly frustrated and although all the staff were incredibly supportive and keen to help, surprisingly, Alder Hey at this time had no specialist Lactation Consultant to call upon although I do not know the position now.
Then, on a Saturday, Charlotte arrived like a breeze of fresh air and positivity, which gave me such a boost! She was the most amazing help and with a tweak here, and a confidence boost there, a pep talk and latch demo with the muppet-doll later, my daughter was finally beautifully latched on and managed her first effective feed. It lasted a wonderful 10 mins. She was still on passive O2, her lungs were still weak, she was still recovering from her surgery, so everything had to be *Exactly Right* to enable her to feed, but we did it! I’ll never forget that moment, it was our turning point, the moment I first truly believed my daughter could actually be breastfed.
We had to continue with topping her up via her ng-tube for a further week whilst she gained the strength to take a full feed. But once I knew I could get her properly latched on, I finally felt that we could succeed and after all the months of uncertainty, hard work to express around the clock and tears of frustration and fear that had gone before, that really meant so, so much!
Because I was so well supported by Charlie in preparing to express for her from birth, I also managed to donate over 10 litres of surplus breastmilk to two special care units.
14 months on:
Since my daughter began breastfeeding, she has literally gone from strength to strength! She’s amazed us all by developing into a strong and healthy looking child who shook off her last cold faster than her older sister! I didn’t even feel the need to take her to the GP. The paediatricians are all really pleased with her and If you saw her, you’d never guess that my happy, smiley baby had ever been in such a critical condition, had to fight so hard just to live, or had ever been fed in any other way than in my arms at my breast.
Throughout this traumatic time Charlie was a tremendous support to us and worked hard to ensure we had all the information and practical help we needed to succeed in starting and continuing to breastfeed our precious daughter. I wouldn’t hesitate to recommend her services to another mum or mum-to-be.