In December 2017 I was given the most devastating news about my beautiful baby girl in which I was carrying. My beautiful princess had been diagnosed with HLHS which is also known as Hypoplastic Left Heart Syndrome which means the left hand side of her heart simply hadn’t been formed. Instantly I felt the need to research to try an prepare myself as best as possible, little did I know what the future would entail.

At my 20 week appointment where I was expecting to find out the sex of my baby, I was given the difficult news and given an option I never thought I would have to hear. I was given the choice to terminate my pregnancy for medical reasons, but knew in my heart my daughter was a fighter and couldn’t take that chance away from her. Initially, I questioned myself and what I had done wrong or what I could have changed. However, HLHS is not a genetic condition, nor could I have done nothing different. HLHS is an incurable condition but can be treated with 3 major open heart surgeries before the child turns five years old. I knew immediately that there would be a long and difficult road ahead for my little family.

From what people had told me, I expected to enjoy pregnancy and enjoy preparing for my new baby. However, from 20 weeks my pregnancy consisted of researching the condition, following groups such as little hearts matter, regular hospital appointments, check-ups, scans and meetings to talk about the condition and what was to be expected.

On the 30th March, Khadija Ahmed, my baby girl was born by an emergency C section weighing 4 pound and 3 ounces. Due to the C section and initial complications with her breathing, I was not able to see her until 11 o’clock. They were the longest 7 hours I’ve experienced, longing to see my daughter and check to see how she was doing. At this point, I received further devastating news which required immediate surgery. She had also been born with another condition known as Tracheo-Oesophageal Fistula (TOF) which we now know as an Airway Tof. In simple terms, this means my baby was born with a gap in between her windpipe and that her windpipe was connected to her stomach rather than her lungs meaning air was going into the stomach and was unable to escape.

As a result, my daughter required immediate transportation to Birmingham Hospital and I was unable to go with her because of my C section. I had to leave my baby girl whilst she was to travel to Birmingham, meaning I was unable to kiss or support my daughter in the way in which I should have and only got to hold her hand for around 30 seconds before she was taken from me with tubes covering her.

From that moment on Birmingham had a huge impact and supportive role during this overwhelming experience. The Doctors rang me and informed me of the procedure and what was about to happen, my babys life and my future was in their hands. Awaiting an update, made me feel helpless and overwhelmed with emotions I didn’t even know existed. I then received the phone call that the surgery went as planned and my baby had made it through.

Just when I felt a little more at ease, the following morning Saturday the 31st, I received a phone call from the hospital asking me to discharge myself because they didn’t know whether she was going to make it. Instant panic kicked in and I just wanted to be with my princess, whilst I waited for doctors to discharge me, I was longing to be with my daughter. The next 24 hours consisted of meetings, choices and watching my baby girl fight for her life.

On the Sunday after all family had left for the day, Khadija took a turn for the worst. I was told she was not going to make it and to get all family there so they were able to see her for the last time. This news meant I was able to hold my daughter for the first time and what I expected to be my last time. Somehow, with our families support and prayers she made it through the night and appeared to make small improvements. Whilst she was still critical she was now stable, but unable to have her heart operation due to a range of complications and lack of stability for a period of time.

Throughout the week she continued to defy the odds of the doctors and make small improvements on an hour to hour basis. During this time, the doctors and nurses had such a huge and positive impact they supported us and lifted us when we needed. Whilst they were honest, I had every faith that they would do the best for my daughter and felt they generally cared for me, my partner and our little soldier. Later within the week we were informed she had a bleed on the brain, her heart was struggling meaning her organs were starting to fail yet she still continued to fight and make small improvements.

Whilst I tried my best not too, my baby girl started to give me hope showing me signs she was fighting by opening her eyes and squeezing my fingers. Little did I know what was about to happen, on Sunday the 8th April, I received a call from my room asking me to come down because her heart rate at dropped – my heart sunk but I just expected it to be the same as the other times yet still ran down. From this call, within 20 minutes my daughter had taken her last breath in my arms. Words can’t express my heartache and pain yet relief that my precious princess was now at rest.

This whole experience has been overwhelming in ways I had never imagined, but has made me so grateful for the time in which I had with my loving daughter and the support in which I have received throughout the whole experience. The hospital have guided and supported us from the moment in which they could. The nurses have had a life-long impact on us which I will be forever grateful and in-debt too. I can’t think of the words that would do them justice for the way in which they have help myself and my partner. I would also like to thank all the special women that have supported me from my little hearts matters group who again have supported me every step of the way and been a comfort since we started this journey.

The money in which we are trying to raise is just a little way to show my appreciation to the Hospital and give back for all they have done for my little family.

My Princess Kahdija Ahmed. 30th March 2018 – 8th April 2018.

Thanks for taking the time to read our story.

Much Love,

Demi and Usama.