Jethro is a fierce little boy with an unstoppable, tenacious temperament that permeates all he does. We affectionately call him “Our little Lion Heart”. Although he is just a little boy, he has a “larger than life” personality that draws in all that he meets. No matter where we go, perfect strangers will stop and come up to him and talk to him and try to squeeze his very chubby cheeks. People LOVE him, like they just can’t help themselves, he somehow makes people laugh and smile, no matter who they are or where we are. Looking at Jethro, you would have no idea, the journey he has walked…
Jethro is a fierce little boy with an unstoppable, tenacious temperament that permeates all he does. We affectionately call him “Our little Lion Heart”. Although he is just a little boy, he has a “larger than life” personality that draws in all that he meets. No matter where we go, perfect strangers will stop and come up to him and talk to him and try to squeeze his very chubby cheeks. People LOVE him, like they just can’t help themselves, he somehow makes people laugh and smile, no matter who they are or where we are. Looking at Jethro, you would have no idea, the journey he has walked…
Jethro was born at 34 weeks; at the time he seemed to be a healthy little baby boy and was taken to the Neonatal ICU as a precaution because of his prematurity.
The day after he was born, the team looking after him noticed that there was green bile, coming back through his ng tube, which had been placed as a precaution, he also had not passed a stool and although his stomach was soft and not swollen, his paediatrician decided it best to send him for an ultrasound.
Later that evening a surgeon came to see us and explained that there seemed to be a problem with his intestine, at this point they were not sure on the severity, but that Jethro would need surgery to see what was causing the blockage.
As it was a Saturday an emergency team was put together and the surgery performed early in the morning. We were told the surgery would last around 3 hours, so when we got a call 45 minutes after leaving him in the theatre to come back to the NICU, we knew something had either gone incredibly well or horribly wrong.
Unfortunately, it was the latter, it was explained to us that Jethro’s intestine had twisted and gone gangrenous and had to be removed. A term baby is born with between 150 cm and 200 cm of small intestine. Jethro’s had twisted about 5 cm from the beginning of his small intestine, and he had lost everything right up to 1.5 cm before the end, just before the colon. This left him with 6.5 cm of small intestine, and a rare disease called Short Bowel Syndrome (SBS), in Jethro’s case, ultra-short.
As your small intestine absorbs all the nutrients that you need from food, without it you cannot survive without medical intervention. The options were explained to us, there is a form of IV nutrition called Total Parenteral Nutrition (TPN) that Jethro would need to be on for the rest of his life, unfortunately this is not liver friendly at all and so after several years, many patients can no longer stay on TPN and would therefore need a transplant. The tricky thing is that often patients like this then need a small bowel and liver transplant, and small bowel transplants are not done in South Africa.
I was a father already to my eldest Ethan, and so I thought I knew what to expect having a second child - but you don’t really imagine they would need surgery at 2 days of age. Once I wrapped my mind around the early surgery, I tried to prepare myself as much as possible, but at no point did I think that it was going to be something that was “unfixable”.
We decided to do everything in our power to save our beautiful, little baby boy, and that no matter how long he had, we would love him and do our best to give him a wonderful life.
He had a second surgery at 5 days of age, called a STEP surgery, which is a relatively new technique and not performed by many surgeons globally, never mind in sleepy, sunny Durban. Luckily for us, we had Dr AS Shaik, who is an amazing Doctor, surgeon, and a generally all-round wonderful person. Jethro’s bowel was lengthened to a total of 15.5 cm (we are grateful for every cm) and joined back to his colon and he had a gastrostomy tube placed.
What followed was a very long, 80 days in the NICU. There was extreme highs; such as the first time his stomach started working, his first bottle (which was only 2.5 ml of formula!), as well as seeing him grow bigger and stronger and tolerate more formula. At the same time there were extreme lows, Jethro battled multiple infections in the NICU, one of which nearly killed him just as he was about ready to go home and there were many other setbacks along the way. This journey really taught as patience, it felt as if you took one step forward, just to take two more backwards. It was quite a surreal part of our lives; you never quite knew what the day would bring…
Three years on and Jethro is still on TPN, however it only makes up a portion of his total calories, his liver is looking great, he can also tolerate elemental formula feeds that are easily absorbable, and he can eat some food orally, although we are not certain if or what is absorbed from this.
All in all, he is defying the odds, and we are hopeful that one day, even maybe soon, he will be able to come off TPN if he continues to do as well as he has done so far.
[continued from Rarity Mag]
We have learned so much on this journey and have grown as people tremendously and have taken away from this experience, the following:
We have learned to advocate for Jethro no matter what, we had to put aside all fears or insecurities to always make sure that Jethro is getting the care and treatment that he needs.
To accept that as much as we like our independence, that raising a rare gem like Jethro takes help and support from many people, whether it is family, friends, dieticians, Doctors, as well as support groups online or in person.
To surround Jethro with the best possible team of specialists, people with experience in SBS, with the right mind-set around his condition and his capability. We have been extremely fortunate and blessed to have had Dr AS Shaik and Dr JF Roos looking after Jethro from the start, without whom I know he would not be here today. There are many more on his team and all of them are great at what they do and amazing people to work with.
We have begun to accept that our life, will always look a little different to other families’ and that is okay, this is a very different journey to the one we imagined but it is our journey, and for as many tears, anxious moments, and frustrations we have it is also full of love, laughter and a multitude of miracles. In many ways we appreciate life and what we have far more fully than before.
Never give up hope! We have been told over and over that Jethro shouldn’t be here today, but he is here, and he is amazing; wandering around dazzling all he meets with his chubby cheeks and cute smile!
Yours in love
Warren Eksteen
Content & Image credit: Supplied