In the first of a new series on FamilyPoint, Gemma from Anglesey, who blogs under the name Heart Mammi, shares her story of what it’s like to have a daughter with a congenital heart defect and the surgery that goes with it.
I have a 3 year old daughter, Martha Grace. She calls me Mammi. She has recently mastered potty training and now goes to school dressed in uniform like her big brother and big sister. Believe me, there were days where I didn’t think I’d ever say a sentence like that.
We first found out our baby had a problem with her heart at our 20 week scan. After a couple of appointments at Liverpool Women’s Hospital we weren’t happy with their prognosis. We were then referred to Great Ormond Street Hospital (GOSH) where it was confirmed that our baby had an Interrupted Aortic Arch Type B and a large Malaligned Overriding Ventricular Septal Defect (VSD).
“She would be transferred to Great Ormond Street within her first week for life-saving open heart surgery.”
Plans were put in place for me to be induced at University College London Hospitals (UCLH) when I was 38 weeks. She would immediately be started on an IV of prostin to keep her arterial duct patent. She would be transferred to GOSH within her first week for life-saving open heart surgery. We knew the risks. Either she didn’t have the operation and died, she had the operation and died on the operating table or in recovery – or by some miracle she survived.
Martha’s 1st operation
Martha’s 1st operation took place on Tuesday 27th August 2013 when she was just 5 days old. I was still physically recovering from childbirth and I was facing losing my child.
She was in theatre for just over 6 hours. They managed to repair the interruption to her aortic arch. Unfortunately as her VSD was in such a difficult position they weren’t able to close it. So they left her with pulmonary artery (PA) bands. She would need another operation in a few months time to remove these bands.
It really took its toll on Martha’s little body. During the 1st few days Martha’s kidneys really struggled with the shock of being on by-pass. They were failing and she was badly overloaded with fluid. She needed peritoneal dialysis (PD) for a couple of days.
The fluid overload meant the chest closure was delayed. Yet the PD worked its magic in a couple of days and our little puffy baby looked like her beautiful dainty dolly self. Finally 5 days post-op they closed her chest. There was no stopping Martha then. They removed her chest drains later that day. She was extubated the next. And a few days after that she was moved out of ICU and up to High Dependency.
Home to Anglesey
Exactly two weeks after her open heart surgery we were told they would be kicking us out to our local hospital. Martha had been stable from a cardiac point of view and they couldn’t keep a bed for her just for her feeding issues. Yet we wanted to be discharged home and not to our local hospital. Our last few days at GOSH were spent being trained so that we could be signed off on nasogastric (NG) tube feeding Martha Grace. During her next admission this was a skill that came in handy.
18 days after major open heart surgery, we brought Martha Grace home to Anglesey. I settled into a routine of being a Mammi of three. Martha was a dream and within three weeks she was exclusively bottle feeding and didn’t need her NG tube.
When she was 7 weeks old we had an outpatients appointment at GOSH. Dr Sullivan told us she should probably have her second operation for PA de-banding and VSD closure within a couple of months. By then it was October and my main fear was of being in hospital over Christmas. Looking back now that was the least of my worries.
A return to GOSH for more surgery
The phone call came at the end of October that they had Martha listed for theatre on Thursday 14th November with Dr Victor Tsang. I’ll never forget meeting Dr Tsang. On the morning of surgery he walked around the bed and kept repeating “This is a big operation, on a small baby.” When I asked him how long he thought the operation would take, he told me he had cleared his whole day for Martha. He left us by saying “So we’ll call you when we’ve finished and hopefully we’ll have good news.” All of us were too scared to ask if he meant “good news – we did everything we needed,” or “good news – your baby is still alive.”
“This is a big operation, on a small baby.” – Dr Tsang.
We left Martha in the anesthetic room just before 10am. It was 2:30pm before we had a phone call to say it was finished. She’d made it. This is when our nightmare began.
Heart blocks, pacemakers and collapsed lungs
Martha had become unstable at the end of the operation. She was being paced by an external pacemaker. At that point she was in complete heart block. They were hopeful she’d return to a sinus rhythm but if she didn’t then she’d need a pacemaker.
While we slept in our bed at the parents accommodation that night Martha had become really unstable. It was a total shock to us as she had held her own the first night after her 1st operation. 3 Cardiologists spent well over two hours performing an ECHO on Martha that afternoon. This wasn’t easy as her chest was still open. They were trying to figure out why she was so poorly.
She remained in a critical but stable condition all weekend. Yet by Tuesday they were ready to close her chest. I imagined the same thing as last time would happen again, that she’d start to improve once her chest was closed. Unfortunately things got a lot worse before they got better.
“I thought that once the pacemaker was in then we’d be on the home stretch. Martha had other ideas.”
Martha developed pneumothorax (collapsed lung), which delayed her extubation. Then she got chylothorax so she was fed monogen. By the time she was well enough to consider extubation again, she was listed for theatre to have her pacemaker fitted. She needed several doses of insulin upon returning to the ICU after having her pacemaker implanted. This was because her blood glucose level had skyrocketed from the trauma.
All hands on deck
I thought that once the pacemaker was in then we’d be on the home stretch. Martha had other ideas. She was extubated the next day but after an hour or so I could see she wasn’t happy and I begged our nurse to call the doctor over. Pretty soon we were in the middle of a scene from Casualty as everyone crowded around her bed. They thought she couldn’t breathe. But in fact it was worse than that – Martha was in atrial fibrillation.
She was prescribed Amiodarone to try to slow her heart down and Heparin to thin her blood so that it wouldn’t clot at the bottom of her ventricle. Her heart was going so fast that the Electrical Physiologist couldn’t even programme her pacemaker to override it. There were a few things they could then try however.
First on the list was cardioversion where they would try to capture her rhythm and shock her heart back into sinus rhythm. This of course meant she needed to be fully sedated and ventilated again. I remember asking if they really had to ventilate and sedate her. I’ll never forget Dr Mangat’s reaction, “It would be very cruel to do that, we’re sending 20j of electricity in to her body.” I had no idea what cardioversion meant.
We were blessed and the cardioversion worked. We let her rest for a few days before attempting another extubation. Again I thought we’re on the home stretch now, it’s the end of November so hopefully we’ll be home in time for Christmas.
We’ll be sharing more of Gemma and Martha’s story over the next few weeks,including further operations, home life and looking ahead to future surgery. In the meantime head over to heartmammi.co.uk for more info.
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