My Heart Princess

In December 2007 I gave birth to my second child, a beautiful baby girl, Tiana, who weighed just 5lb 14oz’s despite arriving 10 days late.

tiananewborn

As my first born was a boy I was so excited to be able to buy all the pink girly clothes for her. We were so excited to bring her home just 12 hours after birth.

We settled in to life as a family of four and were very happy, it seemed like Tiana was the perfect baby, she slept through the night pretty much from day one and barely cried; she was not a great feeder tho but we just thought she didnt want much each feed as she was small.

At 6 weeks of age I took Tiana for the usual 6 week check up with the doctors and that is where our nightmare began, he discovered that she had a heart murmur so referred us to the hospital for extra checks, the appointment was for 5 weeks time, we were shellshocked but tried to carry on at home as normally as possible but in the next few weeks Tiana started to lose weight and her feeding was getting worse, she would struggle to take even an ounce without falling asleep. Due to the doctor and health visitor’s concerns with Tiana we were sent to the hospital when she was 10 weeks old to try and find out why she was losing weight, the hospital were also now concerned so booked her in for an ECHO on her heart.

A doctor from Great Ormond Street Hospital who runs clinics at the Norfolk and Norwich Hospital was the one to scan our little princess to check her heart and it was then that Dr Derrick told us the devastating news, our princess had been born with a rare heart defect called Alcapa (Anomalous Left Coronary Artery arising from the Pulmonary Artery) and the more common Mitral Valve Regurgitation defect. Dr Derrick then informed us that Tiana would need open heart surgery as soon as possible and that we were to be rushed down to Great Ormond Street Hospital the very next day.

On March 5th 2008 we arrived at Great Ormond Street Hospital where we spent a sleepless night with Tiana worrying about what she was having to face; It was decided that surgery to sort the Alacpa was to take place the very next day;

t1stop

Tiana was taken to theatre by her daddy as I just could not face it, I kissed and cuddled her and told her I would see her soon, the next 5 hours felt like a lifetime while our princess was operated on but finally we got word that it had all gone well but the next few hours were critical, Tiana was on the Cardiac Intensive Care Unit and hooked up to all sorts of machines with wires all over her tiny body; We were told to expect to see her improving over the next few days and then weeks but something was not right, she was not getting any better at all, had the surgery not worked? After 3 weeks of no improvement we were then told that Tiana’s Mitral Valve was not working as it should and that she would need another operation on her heart so they could repair the valve. To say we were gutted was an understatement, it was bad enough seeing her go through her first operation at 11 weeks of age and now at 14 weeks she had to go through another.

Her second operation was scheduled for March 27th, this was her brother’s birthday, we were so stressed as Dylan (her brother) had been bought to London to be with us for his birthday and now it looked like all the focus would be on Tiana but on the morning of the 27th Tiana developed a slight temperature so surgery was put off for a few days, we were relieved for Dylan’s sake and got to spend some much needed time with him.

tiana2ndop

Tiana’s surgery to repair the valve went well and over the next few days she started to finally improve, she was still quite poorly but better than after her first surgery; mid April we were told that Tiana was well enough to be transported back to our local hospital in Norfolk so were overjoyed, after a few weeks at the Norfolk and Norwich she was discharged and we were so happy that we could take her home after all she had been through.

Life settled into a routine of feeding Tiana through the tube in her nose and giving her medicines throughout the day to help her heart recover and her daddy even decided to do a 13,000ft solo parachute jump to raise money for GOSH; after a few cancellations due to the weather Kevin finally did his jump at the end of August 2008 but that day Tiana was very grizzly which was not like her at all and I just didnt know what was wrong with her, she became very poorly again and was admitted back into hospital and an emergency scan was arranged for very late in the evening. The sonographer came and did the scan, we discovered from the scan that Tiana had Endocarditis (a rare and potentially fatal infection in the heart) . Our local hospital got straight on the phone to Great Ormond Street to report their findings, on their advice Tiana would again be rushed down to GOSH again the next day but would have to be put to sleep before her journey.

Tiana was taken down to the Intensive Care Unit the next morning where we stood by her bedside while all the equipment was being prepared by the CATS team (Children’s Acute Transport Service) The time came for them to administer the drugs to put her to sleep so we were asked just to wait behind the curtains outside her cubicle; we stood there listening to the machines and suddenly Tiana’s heart stopped beating, I went into meltdown and was totally distraught thinking we had lost her after all she had been through but after two or 3 of the longest minutes of my life the doctors had managed to get her heart restarted, wow what a relief that was but at that point we realised how very very poorly Tiana was; she was finally stable enough for her journey to GOSH to begin, she was being transported with lights and sirens on due to the urgency to get her there but it was still going to be a 2-3 hour journey and her dad and I were to follow down in our car.

On arrival at GOSH we went straight to Cardiac Intensive Care to see Tiana as she had arrived a while before we had and on September 9th Tiana went back to theatre for the 3rd time, whilst in surgery doctor’s were unable to repair her valve which had been damaged by the infection so had to replace it with a Prosthetic Valve. This meant Tiana would have to take blood thinners for the rest of her life and would need a 6 week course of strong antibiotics through a hickman line that went into the side of her chest and would remain at GOSH for at least that duration.

t3rdop

Tiana was finally discharged from hospital in November 2008 and since then she has really come on in leaps and bounds but will always remain behind her peers developmentally due to the amount of time she spent in hospital in her first year of life

Tiana is an amazing little girl and makes the whole family proud on a daily basis

This photo shows Tiana in June this year 🙂

Tiana

 

One thought on “My Heart Princess

  1. shona mackie

    Wow an amazing story of heart break and love as im a heart patient I know the feeling of utter believing anything like this can happen Tiana looks fab well done girl you are an amazing person for all that you have undergone with having an amazing family behind you

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