We found out at our 20 week scan that Mali had congenital heart defects. I was given a date for induction for the 19th June 2012 at Cardiff University Hospital. After a very quick labour Mali arrived at 9.27am on 20th june 2012 weighing a healthy 7lb 14oz. We were allowed to hold Mali for a few minutes before they took her to neonatal for scans and an ecg to check her heart now she was born. After two hours of being away from Mali we got to see her again and we were given Mali full diagnosis. She had Double Inlet Left Ventricle, VSD, Pulmonary Stenosis. They told us she only had half a working heart, which ment she only had one pumping chamber, whereas the normal heart would have two.
At 5 weeks old it was decided Mali should have a cardiac catheter at Bristol childrens hospital to stent Mali pulmonary artery to try and get her oxygen saturations higher. On 23rd July 2012 Mali went down to the cath lab at 1pm. We were told it would take around an hour and a half, after three hours we started to worry as we had not heard anything from the Drs. An hour later Mali consultant came and told us that the stenting of the pulmonary artery had not gone to plan and unfortunately she was on her way to peadiatric intensive care. They explained that due to the way Mali heart was formed they could not get the stent into the artery so had to bring the stent back down the blood vessel it was in. As they did this the stent unravelled near the groin and cut the blood vessel it was in.They had never seen this happen before. She spent a couple of days ventilated to help her body recover, a week in PICU and one night on ward 32 then we were home. She recovered really well after this and showed us she was our little fighter.
Our time at home with Mali was short lived as 3 weeks later Mali oxygen saturations dropped to 55-60%. Cardiff decided they wanted to admit her for the night to monitor her. That night though Mali continued to get worse and her saturations continued to fall into the 40% even on oxygen. Mali was then blue lighted up to Bristol childrens hospital with my mum and I following in the car. Over the next few days Mali still didn’t improve and she kept de satting very low. We were told she would need her first open heart surgery. This surgery was called the Glenn Shunt. We were warned by her surgeons that normally this operation was done between 4-6 months, Mali was only 10 weeks old. They said they weren’t sure how she would cope with the surgery and how long her recovery would be due to her age.
Unfortunatly this was Mali only chance of survival as without it she would eventually die. We trusted the surgeons and had faith she would show us she would be a little fighter all over again. Taking her down for surgery was the hardest and most emotional thing we have ever had to do. We stayed with her until she fell asleep, then we left her with the amazing surgeons and staff.
Mali spent 7 hrs having surgery, we were told after 7 hours all had gone as planned and she had survived surgery. Now she just needed to get through the recovery. Mali recovery was slower than normal but after 12 days in PICU, 8 of those days ventilated and 2 days on ward Mali was allowed home. She had surprised all the doctors at how well she had recovered and proved to us all she was a little fighter.
Mali has been doing really well since her last open heart surgery. Her next surgery will be between 3-5 years old, when she has the fontan.