Having a baby can be a magical experience. But for new parents Jess and Charlie, it has also been the hardest time of their lives. When their daughter, Cleopatra (Cleo), was born a month early in December 2020, their world turned upside down as they embarked on an unexpected complex care journey …
Unexplained health needs
When Jess was pregnant, her tummy measurements were very small. Despite lots of tests and monitoring, when Cleo was born, she weighed just 3.6 pounds and it was clear she had some unexplained health needs.
After a month being cared for around the clock by experts, in the neonatal intensive care unit (NICU) at King’s College Hospital in London, the family were finally discharged. But the following weeks were far from the conventional newborn bubble they’d expected.
Jess, Cleo’s mum, said, “We had a few very stressful weeks at home with her not growing, not feeling very well and her breathing was very laboured. Then in March 2021, we ended up at the Evelina Children’s Hospital.”
This is a specialist hospital in London specifically for children and young people with health conditions. Here, they identified a grade four upper airway tracheomalacia and bronchomalacia. These rare conditions cause collapses of cartilage, blockages and secretions in the airway, making it difficult for Cleo to breathe by herself.
After a number of touch-and-go moments while Cleo was in hospital, it was decided she needed a tracheostomy to stabilise her breathing. It was Cleo’s third surgery in five days, leaving her new parents exhausted with worry and tiredness.
Jess said, “I’ve written blogs on both our intensive care experiences with Cleo. Writing it down and sharing them was a much better way of processing what happened to us because otherwise, it swirled around my head like a nightmare that wasn’t real.”
Thankfully, the tracheostomy surgery was a success. Sadly though, because of her narrow upper airway and unsafe swallow, Cleo became completely food averse and needed a percutaneous endoscopic gastrostomy (PEG) fitted. But things were improving and finally, after long days and even longer nights, Cleo was ready to go home.
Because of Cleo’s tracheostomy and other complex care needs, she requires 24-hour care. This meant a care provider and specialist equipment needed to be in place before she could return to the family home. This can take some time, which was frustrating for Jess and Charlie.
Jess recalled, “At the time, I just wanted to get home and didn’t care if there was a medical hospital grade cot, or carers to come into the home and look after her. But I very quickly realised how essential that was for us.”
After an assessment, the Clinical Commissioning Group (CCG) agreed to fund five nights of care and support to enable Jess and Charlie to get some sleep. They were also responsible for finding a suitable provider to meet Cleo’s complex care needs while at home.
“We were getting impatient, and didn’t know how it all worked, so I started looking for care companies. Voyage Care jumped out at me and I just fell in love with the company. Then the following day, the discharge nurse informed me they would be our care provider. I was so happy!” said Jess.
A phone call from one of our Clinical Nurse Managers provided Jess and Charlie the information they needed. She explained how the process worked, answered their questions and arranged a meet and greet with the two Healthcare Assistants (HCAs) who were selected to support Cleo.
Jess remembers the meet and greet and said, “It was quite nerve-wracking meeting someone who was going to look after our baby. But we very quickly clicked with the two HCAs, especially Monica. When she first met Cleo, she gave her the biggest cuddle and just said, ‘me and you are going to be best friends.’ It was so heart-warming.”
Complex care that’s made a difference
Since that first encounter in July 2021, we’ve provided Cleo’s family with complex care and support overnight from 21:00pm to 06:00am, so Jess and Charlie can recharge their batteries. This is provided seven nights a week, topped up by Jess and Charlie privately.
Importantly, Cleo has made good progress since Children’s Complex Care have been supporting her. She’s only had one three-night stay in hospital due to a respiratory virus and has recently started sitting unaided. This marks a big step in her development, providing much needed reassurance for Jess and Charlie, who are still navigating their new complex care world.
“I remember the moment I felt totally at ease with your care,” smiled Jess.
“In our flat, we have a window that looks into Cleo’s nursery from the living area. One of the first few days after we took Cleo home, we had friends round for dinner to celebrate having Cleo back.”
“One of the carers, Monica, arrived. During dinner, I turned to look at the window and she was cuddling Cleo while dancing and singing with her. It was the sweetest moment that made feel so at ease with Cleo’s care, because she looked so happy.”
Looking to the future
The cause of Cleo’s complex care needs is a mystery. Despite endless genetic tests, genome sequencing, surveys and scans, specialists are still no closer to a diagnosis. Doctors are hoping to test Cleo’s skin cells soon, to see if that will bring them closer to some answers.
For Jess, this has been one of the most difficult parts of their complex care journey. She said, “During our extensive time in hospital, we met families that had something to explain their baby’s situation, delays or development problems. For us, not knowing or having a benchmark, is a really difficult place to be.”
She continued, “We’re following her lead when it comes to the future and expectations. It would be amazing to see her moving in the next 12 months. Even if it’s just crawling or bum shuffling, it would be nice for her to have the strength in her arms and legs to be able to do that.”
For now though, Jess, Charlie and Cleo are taking it one day at a time; together. And we’re delighted to play a part in making that possible.
Find out more
If your child, young person or client has complex care needs that would benefit from specialist care at home from our Children’s Complex Care experts, get in touch with our friendly team today! Call 0207 407 7704, email CCCreferrals@voyagecare.com or fill out our quick form.
To read Jess’ blog pieces, visit her blog site.