Louisa and Glenn were looking forward to the arrival of their first baby when a scan uncovered a mass on her left lung that was revealed to be a congenital diaphragmatic hernia (CDH). Here Louisa tells her story. This story was also featured in Bliss' magazine, Little Bliss.
“At 34 weeks we were taken into a bare consultation room with just two chairs, a table and a box of tissues and advised that we were being referred to St George’s Hospital 60 miles away from home,” Louisa says.
Her daughter Millie had left-sided congenital diaphragmatic hernia (CDH) – a life-threatening birth defect in which a hole in the diaphragm (the muscle under the lungs) allows organs from the abdomen (stomach) to move into the chest.
“They explained they couldn't see her left lung so couldn't identify the level of damage that had been caused. It felt like our world was crashing down around us. What was supposed to be the happiest time of our lives was being cruelly taken away and the odds of her surviving were drastically reduced.”
Millie was due to be delivered by caesarean section at 38 weeks but just one day before, Louisa was admitted to hospital and Glenn had to find a hotel for him and his children until a place became available at the Ronald McDonald house in Tooting. Louisa’s caesarean was then cancelled for a further two days because no incubator was available for Millie.
“The stress of waiting and not knowing how much damage her CDH had caused took every ounce of energy from us. But when I arrived in theatre the nurses were singing to the radio around Millie’s incubator. It was so reassuring to see how calm they were. My baby would be in safe hands.”
Doctors decided that Millie would be paralysed and ventilated from birth to prevent her using her lung and causing more damage.
“I laid in theatre not knowing what was happening to her, but Millie weighed 7lb 5oz so I had faith that she had the best chance of fighting the CDH.”
Louisa wasn’t able to see Millie until the next day. “I could only put my hands through the incubator to touch her tiny hand, which was black and blue from the cannula. She was on life support, she looked so fragile. I just couldn't stop looking and staring at her, questioning why this had to happen to my baby girl.”
Louisa and Glenn found the situation even more difficult being away from home and their friends and family. “The nurse looking after Millie kindly gave us a Bliss booklet to read. It had the most overwhelming effect knowing there was this support network available to us. I would sit by her incubator reading the booklet digesting and understanding the journey ahead of us. It made me feel so supported.”
The family received another shock when they were told Millie needed to have her operation much sooner than expected. A scan had revealed that Millie’s small bowel, large bowel and kidney had all been pushed through the hole in her diaphragm and were resting on her left lung. As a result her left lung was only operating at ¾ of its capacity.
But following her operation Millie amazed doctors by recovering quickly and moving to high dependency from intensive care after eight days. One day later she moved to special care and five days later she was well enough to be transferred back to her local hospital.
“Her recovery amazed us all. Apart from jaundice and a slight infection after her surgery she looked so healthy. For a CDH baby to recover so quickly is unheard of! We know we still have a journey ahead of us until we understand the long term impacts of her left lung not forming properly but to look at Millie now you would never know the battle she's had to face so early on in her life. She will forever been known as our warrior princess.”
If you have been affected by any of the issues in this post and need support, please call or email us on 0808 801 0322 firstname.lastname@example.org. If you would like to share your story, email email@example.com
Bliss is supporting a research project looking at developing new surgeries for babies while they are still in the womb. This could reduce the risks of premature labour and the number of paediatric admissions after birth. Bliss’ role is to make sure that parents are consulted and involved in this research.
The project is being led by a team at University College London in partnership with KU Leuven in Belgium. In October 2016 three doctoral students who are working on the project ran the Royal Parks half Marathon for Bliss and raised £1,321.
Find out more about this work at gift-surg.ac.uk