a long and unexpected journey...

Hi everyone!

As most of our family and friends know, my sister Kelly and her hubby Greg have been through a few years of crisis and trauma, starting with Kelly's diagnosis of invasive cervical cancer in 2020 and the resulting surgery which at the time was one of the first in Africa. Not to be beaten by cancer especially having lost our mum just 9 months earlier, Kel decided to go public and turned her journey into an opportunity to make as many people aware of HPV and the importance of regular pap smears. Today it’s still something she is immensely passionate about and continues to help connect girls and women with the right information and specialists who can help prevent what happened to her. Visit her Instagram page if you want more info on cervical cancer and how to prevent it.

Kelly and Greg chose to keep the next part of their journey private given the high risk it posed to both Kelly and the baby, so what a lot of people may not know is that the last year has been incredibly trying for both of them as they embarked on the journey to parenthood. With the complications from Kelly's cancer surgery, falling pregnant was not an easy goal - Kelly underwent her second surgery last year in March to allow for an opening in her uterus for the embryo to be placed. This proved to be successful and on the 1st of August 2022 the embryo was successfully transferred. Given the rarity of Kelly's cancer surgery and very little known about whether Kelly could hold a child the first 20 weeks were tense but went by without a hiccup. Sadly at the start of week 21 Kelly's membranes ruptured while she was asleep causing her to lose a lot of amniotic fluid and forcing Kel to go on to strict hospital bed rest on the 7th of December 2022 to save the baby.

From the 7th of December to the 21st of February Kelly was in Sandton Mediclinic on strict bedrest, she overcame 2 hospital super-bug infections, a near scare at 22 weeks when we thought the baby would need to be terminated due to infection, multiple infections, a new antibiotic every week and of course 3 months away from her home, hubby Greg and her beloved doggies.

Beautiful Kai Chelsey Grace Bentley was born on the 21st Feb at 32 weeks via emergency caesarean, unfortunately when she was born she had to be resuscitated due to her lungs being severely underdeveloped. At 1kg and with very immature lungs Kai was admitted into the Neonatal ICU - Kelly went straight into a hysterectomy operation. Given the threat of cancer returning 2023 was always the year that they had been told Kelly would need to undergo a full hysterectomy so they opted to do both operations at once to minimise hospital time.

The op went well but was incredibly complicated, what was meant to be a 20-minute exercise turned into 2 and a half hours because Kelly’s placenta had grown out of her uterus and adhered to a few other organs to get the blood flow that Kai needed because there were not uterine arteries going to the uterus due to the cervical cancer operation in 2020.

The first week was a rollercoaster of healing for Kelly and a completely foreign and rather traumatic introduction to the life of neonates. Kai had a spontaneous stomach rupture on her second day with us which was a major risk, Kelly collapsed in the unit from what we think was a lack of oxygen and poor Greg had to witness both and many other incidents with very little he could do.

Kelly went home a week later, having been in the hospital for 3 months getting home was both a relief and a blessing. Kai continued to progress, hitting small milestones and really being an absolute trooper. She eventually came off the ventilator 2 weeks after she was born, she went on to nasal cannula which was incredible because her lungs are so immature but she couldn’t do CPAP yet because of the rupture in her tummy. Her lungs unfortunately are so immature that she cannot go without oxygen support. 5 weeks in Kai got infected with a hospital super bug the same one Kel got except it colonised her lungs, so she had to be put on to the CPAP and moved into a separate room in neonates to avoid infection.

Two weeks after Kelly was discharged she started to experience a leak similar to her waters breaking, it was the start of a very distressing period for both Kelly and Greg. The doctors discovered a fistula (hole) in Kelly’s bladder, she went in for surgical repair but that night she came out the catheter that was put in to help heal the repaired blader kinked and her bladder burst. The rip was 5cm long and the fluid was leaking into her abdomen, two days later she went in for another surgery to repair the rupture. She came out into high care, but 24hrs after that surgery she started getting terrible pain in her left kidney, scans were done and it was discovered that her ureter had a high-grade blockage meaning the kidney was swelling and not draining. Back into theatre, she went, this time with a lot of angst – 5 operations in 5 weeks is not ideal. When Kelly came out they, unfortunately, realised the superbug that she had previously was back and she had severe sepsis. She went into ICU for 10 days, with the first few days being very touch and go, her weak body following so many operations was trying to fight a multi-drug resistant bacteria.

Fast forward to where we are today, Kelly is still in the hospital, she has a very long road to recovery given the complexity and severity of her case however she keeps her faith front and centre and takes each day as it comes. Greg of course has been through the mill as well, with both wife and daughter fighting for their lives over the last few weeks he has had to keep everything together under immense strain.

Kai is making steady progress, having been in hospital now for over 7 weeks she has at least 6 weeks still to go – she hit the 2kg mark this week which is incredibly exciting as the more she grows the better chance her lungs have.

I’ve been here with Greg, Kel and Kai for the last 4 weeks – I had the priviledge of standing in for Kel to be with Kai when she was too ill to do it and I’ve sadly seen a crescendo in the terrible pain, uncertainty and fear that both Kelly and Greg have been put through over the last 6 months but what really seems to have been the last 3 years since Kelly was diagnosed.

I have set up this page because so many of you have asked how you can help and as a sister I feel rather helpless in the current situation - in the middle of all this trauma, their medical insurance company called to say that Kai’s cover would be limited to the newborn cover of US$100 000 – this cover comes to an end in the next week, and for those of you who don’t know because I certainly didn’t – neonatal cover is incredibly expensive – Kai’s first week was R280 000 alone. We estimate a cost of R4 million by the time Kai leaves given we have already hit R1.8 million in the first 7 weeks.

Kelly and Greg’s insurance coverage is extensive with a US$2.5million annual threshold, given what they’ve been through they chose to ensure that they were always on the best cover, it’s the top plan from an international provider but this is the second time they have been hit with restricted cover due to an abnormal medical emergency.

The first being IVF which was needed because of the cancer diagnosis and now Kai arriving so early and needing extensive treatment because of Kelly’s cancer surgery. Usually BUPA for example only covers $25 000 for a new born so the $100 000 we thought would be adequate, especially with the current exchange rate but sadly this is coming to an end.

Kelly’s treatment for the last 5 months has been fully covered with no shortfalls which is great and is exactly what they have made such an effort to ensure by paying for extensive insurance coverage with no shortfalls but I know this unexpected gap in Kai’s cover is going to put them under serious duress so I’d like to see if instead of flowers (although these are Kel’s favourite) and food we can raise some funds which can go towards bringing little Kai home and giving them a chance to experience parenthood the way it should be.

Thank you so much for all the love and support, it has been an incredible light for Kel and Greg in such a dark time – lots of love, Erin! (the little big sister and very proud Aunt )