Tiana with Alcapa (Anomalous Left Coronary Atery from the Pulmonary Artery) and Mitral Regurgitation.

Tiana’s mother, Lisa writes about all the highs and lows of what Tiana has been through since she was born.  Tiana is one fighter, read on to find out why.

My name is Lisa and I live with my partner Kev and our two children, Dylan who is 8 and Tiana who is now almost 18 months old.

Tiana was born 16th December 2007 and I was overjoyed that I had a daughter after having my son 7 years before. When Tiana was 6 weeks old I took her for the usual check at the doctors and that’s when we first found out that something was wrong with Tiana. The doctor told me that he had detected a heart murmur and he was referring her to our local hospital.

Four weeks later we arrived at the hospital where Tiana had a scan; it was not good news :worried: The consultant told us that Tiana has Mitral Regurgitation (a leaky heart valve) and that she would be booked in a week later for another scan with a doctor from Great Ormond Street Hospital (GOSH) who visits our local hospital once a month. A week later we took Tiana back to the hospital and she was scanned for a second time. Dr Derrick, the heart specialist from GOSH, confirmed that Tiana did have Mitral Regurgitation and then he turned to us and told us he had found another defect in her heart. The second defect was called Alcapa (Anomalous Left Coronary Artery from the Pulmonary Artery) and was a very rare defect. We were asked what we were doing the next day, we replied ‘nothing, why?, Dr Derrick then said “that Tiana would need immediate open heart surgery and would be transferred to Great Ormond Street Hospital in London the next day”.

We were in shock and could not believe what our beautiful daughter was about to face but we went home to prepare stuff to take with us and to arrange for family to look after my son.

We arrived at Great Ormond Street Hospital on March 5th 2008 and Tiana was booked in for surgery the next day. It was a sleepless night for Tiana’s daddy and I. The next day Tiana was prepared for theatre and then the time came for her to go and have her operation. I was very nervous and anxious about Tiana having such a huge operation when she was so tiny.

Tiana was in theatre for 6 long agonising hours but we finally got the call to say her operation was over and that we could go and see her on the Cardiac Intensive Care Unit (CICU).  We arrived at the CICU and to say we were shocked at all the equipment around Tiana was an understatment. We were not prepared for all the wires that were coming out of her tiny body and all the machines that Tiana was hooked up to. We spent many hours over the next few days just sitting with her and waiting for her to start recovering but Tiana was making no progress and as a week passed we were very concerned as by now she should have recovered quite well. Tiana was getting infection after infection and then we got the news that Tiana’s nasal swabs had tested positive for the infection MRSA. Yet another shock for us to deal with. Tiana was immediately put into an isolation cubicle.

Three weeks after Tiana’s 1st operation we got more bad news. Tiana was not recovering after having her Alcapa rectified and would need to go back to surgery to have her Mitral Valve repaired. Tiana’s condition was very serious by this point and we were told that she probably would not survive another operation but she definitely would not survive without the operation so we had no choice but to agree to the 2nd operation.

Tiana after her first open heart surgery

On March 31st Tiana was once again taken down to theatre and I was so scared that it would be the last time I would see my baby girl alive but after 6 hours in surgery we got a call saying it had all gone well but obviosuly Tiana was still in a serious condition. Over the next few days Tiana finally started showing signs of improvement and we were thrilled when after 3 weeks we got to cuddle our baby again.

We were finally transferred back to our local hospital 6 weeks after arriving at GOSH. It was so good to be back nearer home a nd Tiana’s daddy and I took it in turns to be in the hospital with her or be at home getting some rest.

At the end of May 2008 Tiana was discharged from our local hospital since first being admitted in March and we were so pleased to have our little girl home again. We all settled back into family life and were enjoying being together again in one place.

Tiana’s daddy decided he wanted to do a solo parachute jump to raise money for Great Ormond Street Hospital who had saved our daughter’s life not only once but twice so it was booked for early August. The day of the jump came but the weather conditions were not good enough for it to go ahead so it was to happen the next weekend. That weekend came and once again the weather was just not on our side so the jump was cancelled and booked for August 31st. That morning we got up and looked outside and finally the weather was ideal so we headed off to the airfield and a few hours later Kev got to do his 13,000ft solo para chute jump. We were all so proud of him, I know I could not have done that. http://www.bravetiana.co.uk/tiana_paper.html

Tiana after her second open heart surgery

The very next day, September 1st, Tiana suddenly became ill and was admitted to hospital. Over the next 5 days Tiana’s condition deteriorated and she had an emergency heart scan at 11pm on the Friday. We were told by the doctors that something was wrong with the heart valve that had been repaired back in March and that our local hospital were in phone contact with GOSH to ask their opinion. GOSH informed them that Tiana would need to go back to them the next day as by this time Tiana was struggling to breathe and was on oxygen to help.

The next day we went with Tiana to the ICU (Intensive Care Unit) of our local hospital where she would be put to sleep for the two and a half hour journey to Great Ormond Street

Hospital. We watched while doctors got all the necessary medicines ready for Tiana’s journey and then came the time for Tiana to be put to sleep. We kissed her and said “we would see her in London”. I waited outside the cubicle while they put her to sleep and could hear the heart monitor beeping away. Tiana was asleep by this point so the doctors then had to put her on a ventilator. As they attempted to put the tube down Tiana’s throat I was still listening to the heart monitor beeping but was getting worried as I could hear that Tiana’s heart rate was dropping very rapidly; all of a sudden the heart monitor stopped and doctors pulled Tiana’s daddy into the cubicle; I followed them into the cubicle and all I could see was a doctor doing compressions on Tiana’s little chest, her heart had stopped, I was totally distraught and inconsolable and begging the doctors to save my daughter’s life. After what felt like a lifetime, around two minutes, the heart monitor finally started beeping normally again! Doctors had managed to get Tiana’s heart going again and had saved her life. After making sure she was stabilised and finally ventilated Tiana then began her journey to GOSH.

After arriving at GOSH on September 6th and having test after test done we were told that Tiana had Endocarditiswhich is an infection in the heart and her heart valve was being destroyed by the infection so it was arranged that Tiana would go back to surgery for a 3rd time. Once again we were in shock at what was happening.

Tiana was in theatre for 6 hours.

Tiana after her third open heart surgery

The operation went well but the bad news was that the surgeons could not repair the heart valve so had to replace it with an artificial one and that Tiana would have to be on a drug called Warfarin for the rest of her life and would need operations to replace the artificial valve as she grows. Again Tiana’s progress was slow and it was then discovered that Tiana had had a large bleed into her chest which was collapsing her lung and so a chest drain was then put in and the blood drained. We don’t know even to this day what caused the large bleed but slowly Tiana began to improve. Tiana was transferred back to our local hospital in Novemeber where she spent just a few days and then was finally allowed home. It was just a month before her 1st birthday yet Tiana has spent 6 months of the past year in hospital.

We threw a party for Tiana’s 1st birthday and celebrated a magical time with our family and friends.

Tiana has really thrived since having her last operation in 2008 and has regular checks to keep an eye on the heart valve.

If you would like to keep up-to-date with Tiana then please go to her website called Brave Tiana

Tiana now 2009

Written by Lisa King
June 2009                                            Photo’s used with permission from Lisa King