A Legacy of Love

Halo-Reign Trophy Bobb was born on 10th March 2017. This is how her story begins:

Luthuli and Kristel married in August 2012 and were excited about starting a family together. They both loved to be adventurous and spent the first few years of their lives travelling and building memories. There came a point in their lives when they began to think more about starting a family of their own. On their anniversary in August 2016, Kristel broke the news to Luthuli that they were expecting their 1st baby and that is where this journey began.

In September 2016 Kristel and Luthuli were booked in and looking forward to having their 1st scan. As you can imagine they were extremely excited and couldn’t wait to meet their baby for the first time. At the end of the scan they were asked to come back for a repeat scan in a couple of weeks as the scan revealed a brightness in the baby's bladder. This became a regular series of events over the next 6 months as the specialists slowly began to notice findings from the scans that they were concerned about. Over the next few months the scans became more frequent and the couple soon found themselves having scans on a weekly basis. The conversations and advice from the specialists soon changed from being positive, to them offering Kristel and Luthuli the option of an abortion. At this stage they had noticed that Halo’s kidneys were enlarged, there was a hole in her heart and a question mark over the amount of amniotic fluid that was present around her body. These early findings led the specialists to believe that Halo-Reign would be diagnosed with a chromosomal abnormality, which would mean that she would either be unlikely to survive the full term of pregnancy, survive the birth and/or live for long after. As such, they were not given the impression from the specialists that there was much hope in continuing the pregnancy and once again a termination was offered. This became a regular topic of conversation throughout the pregnancy. Luthuli and Kristel were firm in their belief that Halo-Reign would defy the odds and despite what they were told continued the pregnancy to full term.

On the 10th March 2017 a trophy was born.

Halo-Reign Trophy Bobb was born at St Thomas’ hospital in Lambeth on Friday 10th March 2017. Much to the surprise of the specialists she didn’t require any intervention such as resuscitation and after a brief check over was allowed to go straight in to the arms of her waiting parents. As you can imagine, after months of negative findings, thoughts and reports; the room was full of love, excitement and a huge sense of relief. As a family we felt as though we had won the greatest prize, against the highest odds. The next 2 weeks were spent between St Thomas’s hospital and then finally the Princess Royal Hospital in Bromley which was Halo’s local hospital.

These next 2 weeks felt like months as the hospital went through all their post birth checks. Due to their previous chromosomal diagnosis, the specialists had what felt like, a checklist of examinations and assessments that they needed to do before they were happy to discharge Halo. Those 2 weeks were emotionally very challenging. The family had been through 9 months of close monitoring and negative thoughts and then found themselves going through more daily checks which also brought negative reports. Although the family appreciated that this was necessary, the process was very emotionally draining. For us as a family, Halo was finally here, she had beaten the odds and we were ready to take on anything! The specialists however, still maintained their views about her quality of life.

Halo’s kidneys were never an issue throughout her life; the central hole in her heart that was of concern prior to birth closed up on its own and there were no issues with her bladder.

All Luthuli and Kristel could think about was leaving hospital and taking Halo home.

On Friday 24th March 2017 that day finally came. Luthuli, Kristel and Halo-Reign were packed up and ready to go home. There was huge relief along with excitement! The things that the specialists thought would happen - didn’t, Halo had shocked everyone and was going home! The consultants had said their piece, shared their thoughts, but now it was time for God to do his part.

Kristel and Luthuli adored their baby girl like no other, and dedicated her to the Lord on 19.08.17 where they shared their testimony of how far God had brought them and what miracles He had begun in Halo; such as discrediting a diagnosis of cataracts. They consistently declared that their daughter would live and could see the evidence in their daughters daily progress and abilities.

In September 2017, the medics diagnosed Halo-Reign with Pulmonary Hypertension. This is a condition that causes vessels in the lungs to be narrow and inefficient and is related to the effectiveness of her heart. Kristel and Luthuli were led to request the condition of Halo’s heart to be checked at this juncture rather than the original plan to have it checked at 12months as was planned at birth. Whilst her condition was deemed as life threatening at this stage, as what became characteristic of Halo-Reign, she overcame and wrote her own story. Halo-Reign, overcame every diagnosis that she was given and despite being labelled with a “life-limiting” illness, continued to push boundaries and limits throughout her life. Halo became more susceptible to germs and colds etc and her parents did all in their power to protect her and learn about alternative means to improve her immune system; whilst ensuring she lived her best life.

Halo-Reign was the strongest, happiest, most content baby making her parents feel exceptionally blessed. She was consistently so good that she hardly shed a tear and only did when it was genuinely warranted. Whilst Halo-Reign’s physical body was hospitalised approximately 4 times, with two occasions being the most life threatening resulting in her being intubated (on a life support machine) and suffering a heart attack. Halo always bounced back better than when she went in. Her strength and beauty taught everyone that their issues were insignificant compared to what she experienced and was still able to laugh and bring so much joy to all that knew her.

The attention and dedication her parents and family had for Halo came naturally and easily despite the physical, psychological, spiritual and emotional weariness, we would all do it again in a heartbeat to have Halo back with us now.

Halo-Reign loved music and dancing and was blessed to have a music teacher visit regularly who’s voice would reach pitches that could break glass! Halo loved it.

Halo-Reign was an amazing naturally born swimmer. She only got to go on approximately three occasions and was going to go weekly once the had overcome this last infection.

Halo-Reign loved being outdoors and exploring various sights and sounds.

She loved her family and would tease them by pretending she couldn’t hear them with a cheeky smile before bursting out in laughter.

Halo-Reign loved her foil! The levels of excitement she would exert when she was reunited with this stuff (her favourite toy) was unbelievable.

Halo-Reign continued to progress beautifully every single day of her life with joy and tenacity. She recently started a weekly sensory/ physio group class with SmallSteps where she did her first painting (albeit completed in her sleep!). This was a major turning point in her development.

Luthuli and Kristel had so many plans, hopes and dreams for and with Halo, who encouraged them to continue to believe and pour into her by how responsive and happy she was. Halo-Reign lived a good and happy life to the end. Every bad report we were given, she overcame. The day of her passing was uncomprehendable (despite her diagnosis) 1. Because her parents and family believed God but 2. Because she was happy laughing and playing with her father moments before her heart stopped.

Despite her diagnosis, Halo-Reign lived a full life. She was our Trophy and we believed we won the greatest award. She will never ever be forgotten and will reign in our hearts everyday. We were excited about Halo being a big sister and her sister will know what an incredible and brave role model she has.

Earths blessing became Heaven's gain on 17th May 2019.