How do you cope when your baby has a congenital heart defect?
It’s time for the second part of mum Gemma from Anglesey’s story. Gemma blogs under the name Heart Mammi.
Catch up with part one – Heart Surgery At 5 Days Old
On the night of 6th Decemeber Martha was given an ECHO that we thought was routine. Later that night Dr Graham Derrick came to visit us. He thought the stall in Martha’s progress was down to the narrowing in her aorta and the shunting through her VSD. He thought they should re-intervene. Yet her surgeon didn’t agree. They had apparently compromised and Martha was listed for an investigative catheter on Monday. Then they could plan the best course of action for her.
Martha’s 3rd open heart surgery
The procedure took just over two hours. She was wide awake and crying when she came back to the ward. Then Dr Derrick came to see us. The narrowing below her supraaortic valve was worse that the ECHO was showing. The shunting through the residual VSD was also more significant. She needed to go back to theatre. Martha was facing her 3rd open heart surgery in her 4 months of life. She was second on the list for Thursday 12th December 2013.
“It’s the recovery that worries me, when she has to do everything for herself.”
The anesthetists took Martha Grace to get started as Dr Tsang was late arriving that morning. They needed an hour with her before surgery could start. We reasoned that the sooner she went down then the sooner she’d be back. When we did see Dr Tsang he told us, “Don’t worry, this operation is a lot smaller than the last one.” We knew from experience that he’s the type to tell you it how it is.
I wasn’t even scared of her going in to theatre for the 3rd time. As far as I’m concerned she’s safe there as everything is controlled. It’s the recovery that worries me, when she has to do everything for herself. We were relieved that she hadn’t suffered any complications and behaved well when coming off by-pass.
My mam and I decided to stay up all night. This was because she had been unstable after her previous operations. I can handle the situation better if I’m there as it’s developing. It’s just easier than if I go away for a few hours and get bombarded with all the bad news in one hit.
We went to bed at 6am and Mark took over until we came back in at lunchtime. She was an angel. Her fluid output was brilliant. Martha wasn’t as reliant on milrinone or adrenalin as she had been after previous surgeries. She had her chest closed 3 days post-op, she’s never had it done that soon after surgery before. She was extubated after 4 days. I was amazed, she was behaving and I even let myself believe that we might be home before Christmas. But I should have known better.
“She was essentially drowning.”
The next day Martha was having a planned 1/2 CPAP break, but I saw her starting to struggle so I had to leave her bedside. It was happening again. Martha vomited and aspirated her vomit. She was essentially drowning.
Christmas at home is off the table
They quickly re-intubated her. And with that any hope I’d had for being home for Christmas were crushed. The plan then was to take it slowly, rest her on the ventilator for a week and take it from there. The next few days were quiet ones and Martha behaved, Christmas came and went and on Boxing Day we attempted extubation again. This was her last time – if she failed she would be fitted with a Tracheostomy.
“…she was a deathly gray colour.”
We went back to the accommodation rather than stay to watch the procedure. We didn’t get a phone call to say anything had gone wrong, so we braved it and headed back to ICU. As we got to her bed space we could hear the whooshing of the Fabian but it wasn’t long before we noticed it was going wrong. There was major recession and she was a deathly gray colour.
I begged them to re-intubate her but they were adamant they were going to give her a chance to prove us wrong. At first I agreed to give her the 20 minutes they suggested. Then they suggested leaving her another half an hour, Then they wanted to leave her another half an hour. Each time they measured her blood gases they improved, the recession decreased and she returned to her normal colour. She looked happier.
She was given a week on the Fabian without any breaks while her heart got used to taking on the job of Martha breathing for herself. On New Year’s Day Martha did well for her first CPAP break which lasted 5 hours. Her second break was planned for 4pm. It was at this time that it was decided that she wouldn’t be going back on the CPAP unless she showed signs of needing it.
She finally moved up to High Dependency later that week. It wasn’t any easier once we got there. Martha still had a distended liver (it measured 5cm at one point) but we re-introduced bottle feeding. We were also able to take her for walks around the hospital in her pram and I was able to take more responsibility in her day-to-day cares.
On Sunday 19th January we were told that pending the results of an ECHO and Pacemaker test – Martha Grace would be discharged that week. On Wednesday 22nd January 2014, 10 whole weeks after bringing Martha Grace to London, we finally boarded a train at London Euston and brought her home to Anglesey.
We’ll be sharing more of Gemma and Martha’s story over the next few weeks, including further operations and life at home. In the meantime head over to heartmammi.co.uk for more info.
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