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The Jooste's Journey with Lana's Heart

Lana and her twin sister, Isabella, were born on the 12th of September 2020. They were welcomed into their family by their 7 year old sister, Laduné, and loving parents. Their arrival was 7 weeks earlier than expected due to Isabella not having enough amniotic fluid. Lana weighed a good 2,2kg and Isabella 1.38kg.

“I had such a healthy pregnancy,” shares Louret, “ the only concern was Isabella’s amniotic fluid. We went for weekly check ups at a fetal specialist in Bloemfontein for the twins and at that time everything was perfect. They could not find any medical issues with both babies.”

Born prem at 33 weeks, the girls both went straight to NICU and were connected to a ventilator. Three days after their birth, the twin’s paediatrician in Klerksdorp informed the Jooste family that he had heard a murmur on Lana’s heart “but that we should not be stressed. He arranged for the necessary tests and sent the results to the paediatric cardiologist”. The cardiologist confirmed that Lana’s valve did not develop as it should have. “On 23 October 2020 the cardiologist came to see Lana in NICU and called us in to explain her diagnosis”. 6 week old Lana was diagnosed with Critical Pulmonary Heart Stenosis and a Ventricular Septal Defect (VSD) - a narrowing of the valve between the lower right heart chamber and the lung arteries as well as a hole between the lower chambers of the heart.

“He explained to us that Lana needed to be transferred to Bloemfontein to receive a Balloon procedure. The next day Lana got transferred to Bloemfontein with Isabella still being in hospital in klerksdorp, it was such a difficult time to leave one baby behind.” Lana received an emergency heart balloon procedure the same day she was transferred due to the pressure on her heart being too high. “She did really well and got discharged from hospital on her actual due date”.

“Lana had a follow up in January 2021,” says Louret, “she had another procedure to receive a stent and did well up until August of that year”. The pressure on Lana’s heart started to rise once again and she had no choice but to receive another stent. “She had a good year but slowly the big open heart surgery was arranged due to the pressure build up and leaky valve.

“Lana was scheduled to have a stent removal and outflow tract enlargement in August 2022 but due to circumstances we got moved to a new team of doctors - Dr Jeff Harrisberg and Dr Erich Schürmann at Netcare Sunninghill Hospital. The hardest part for us as parents was to put our trust into a new team of doctors.” Lana’s new open heart surgery date was scheduled for 21 September 2022, just more than a year after her birth. “We checked into Sunninghill, stressed but hopeful. We met up with the team of doctors, did all the tests and felt more at ease,” shares Louret. The morning of her operation just before she was due to go into theater, her doctors confirmed that she had a virus. “She could not go into theater. We know that God knew best - ‘all in His time’. She got rescheduled for 14 October 2022.”

14 October 2022

“Lana’s first open heart surgery was supposed to be only at the age of 5 but we trust in God leading the way. Lana went to theater. “It felt like a year of waiting for her to come back from theater,” says Louret. She shares that Dr Schürmann and the team removed her stents and a lot of muscle around her right heart chamber.

“She looked so good when she came out of theater… for the first time she had the prettiest pink lips and not dark purple. We knew that she was on her way to recovery.

We waited a long while for her to get off the ventilator and each time they extubated her she had a setback.

“On 23 Oct at 2:00 in the morning, Dr Harrisberg called to inform me that Lana had had a big setback. They had to resus her and put her back on the ventilator and have her completely sedated to see what went wrong. Seeing her like this knocked us as parents down to the ground. We as parents just kept on praying. Dr Schürmann informed the family that a donor valve had become available for their little girl, as the ventricle was struggling without a valve. That same day Lana’s lungs kept collapsing and she was connected to an oscillator.

“My heart was shattered because I remembered the oscillator from the NICU days on other babies. But my heart soon came at ease. We had to wait a week for the donor valve. We still kept on praying for her to just pull through to receive the valve. And then God stepped in…”

On 16 November 2022, Lana went in for her second open heart surgery - this time to receive a pulmonary valve replacement. “Our hearts were at ease knowing that God was still leading the way.” After another year long 4 hours, it was the biggest relief for Louret and her husband to see their little girl come out from theater. .

“After the second open heart surgery she was doing so well. Everything inside her just stood up! The next day you could already see that something inside of this girl had changed!”

On 7 December 2022, 55 days after being admitted to hospital “we got discharged from what became our second home. With our leaving, we left pieces of our hearts behind to the family we gained from all the other warriors inside Netcare Sunninghill CTICU.” On 11 December, 4 days after being discharged, Lana took her first steps and is now running, climbing and even jumping on the trampoline. “Picking up where she left off”.

“We as parents are forever thankful for each and every surgeon, doctor, nurse, physiotherapist and medical worker who was there for Lana. Everyone who believed in and prayed for her healing.

“Thank you Dr Schürmann, Dr Naidoo, Dr Harrisberg, Dr Mamathuba, Dr Nunn and Dr Levy for fighting for Lana and every other patient in the CTICU.

“To all the Nurses in CTICU - we salute you for caring for all these children as your own. When we as parents can’t be next to them you are the ones holding their hands.”

Pictures taken by Louret Jooste and shared with permission.


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