Our Little Fighter Oliver

This sweet lil baby has a rare condition called Eagle – Barrett syndrome, also known as Prune Belly syndrome. It’s a little complicated, but basically he doesn’t have abdominal muscles like we do to keep his organs safe and help his body function the way it should. Because of this condition, Oliver has Chronic Kidney Disease and is in and out of complete Kidney failure. He will need a kidney transplant, but will not meet the weight requirement until around 3 to 5 years old. Oliver lives most of his life in the hospital, occasionally going home for days at a time.

Oliver’s family is doing everything they can to stay strong for both of their kids (Oliver has a super sweet & sassy older sister Emelia) but they’ve officially reached the point where they need help with the cost hospital living and Oliver’s long term care.

Oliver’s family is constantly separated. Violet (mommy) is with him at the Hospital while Lionel (daddy) works and Emelia (big sis) has to go stay with her grandparents in San Diego every time Oliver is hospitalized. Being away from each other is excruciating for the whole family. They will need some extra financial help to make ends meet having to drive from Ventura to Children’s Hospital Los Angeles and to San Diego to see Emelia. Hospital expenses with transportation and food are expensive. Lionel is working to support the family the best he can, but that means long hours and not being able to see Oliver while he is in the hospital. Oliver needs feeds and medication every 3 hours, because of this Violet had to stop working to take care of him full time. They are living with Violet’s mother in Ventura at the moment to help out financially, but it is still hard to make ends meet when you are spread so thin and far apart. Even when Oliver is home, there are so many doctor visits, appointments therapies, and then more hospital stays.

Once he busts himself out of the hospital again (which we know our little fighter will do!) Oliver has a long road ahead of him. He will have multiple surgeries before he is even 2 years old (he’s already had 5). Oliver will also have issues resulting from Prune Belly syndrome including, but not limited to: learning and motor delays; oral issues in which he has difficulty eating by mouth; muscle tone; mobility issues (problems sitting up unassisted, difficulty walking); skeletal and joint issues; organ issues from his kidneys, colon/rectal, bladder. All of these issues will need specialized treatment plans and some of those plans include expensive medical equipment that is not paid for by insurance including specialized car seats (infant car seat $2000, then $3000 for next size), mobility devices, and even just medical supplies like duo derm or extra syringes for easier feeds. Oliver will also need specialized therapies for his entire life. Right now Oliver is scheduled to have 2 days of Physical therapy and 1 day Occupational therapy a week.

Oliver is so loved, and we just want to give what we can to him and his family. If you would like to assist with their financial burden, any donation through GoFundMe would be greatly appreciated. All funds will go directly to Oliver’s immediate care and long term needs. This little bit of help we can give to them will help relieve so much in their lives. 

Background on Oliver:

Oliver has been a miracle from the beginning. His mom and dad, Violet and Lionel, were not sure they would be able to have another baby, and then they were happily surprised with little Oliver. At Violet’s 16 week ultrasound they received the devastating news that their baby boy was sick. Due to LUTO (Lower Urinary Tract Obstruction), his bladder was so distended it’s all you could see on the ultrasound. He needed a life saving surgery while still in utero if he was going to survive. Unfortunately, the doctors made them go through weeks of agonizing tests before determining that they were willing to try to save Oliver with a neonatal surgery during which they placed two shunts to drain his bladder and restore his amniotic fluid. The surgery was a success! Everyone was hopeful for little baby Oliver. Around 30 weeks Oliver’s amniotic fluid started to dramatically decrease again and they were told that there were going to be some very hard, but important decisions coming up. At 33 weeks Oliver had no fluid left and was being crushed, but because of his precarious medical state, they wanted to wait as long as possible to deliver him. Yet again mom & dad were sent home to agonize over whether their baby boy would survive. Almost 2 weeks later on July 23rd, Little Oliver was born. Weighing in at 4lbs 5oz he was going to be a fighter, but he was not breathing and had to have more life support than they initially thought they would have to do. He was put on a ventilator and an umbilical tube for nutrients. Lionel was able to follow him to Children’s Hospital Los Angeles so he could be admitted into the NICCU where his Nephrologist was waiting to assess his kidneys and his Urologist would administer the surgery to find and relieve the LUTO. His condition worsened and surgery was going to have to wait. Violet wasn’t able to see him for 2 days while she was in the hospital recovering from birth. The first couple days of Oliver’s life were hard. His underdeveloped lungs were leaking air into his rib cage, his electrolytes and blood count were low, he needed a pick line and a dialysis catheter and then did not respond well to dialysis at first. The first week Oliver was on and off of dialysis as the doctors fine tuned his treatment, which was so scary because the mortality rate for babies on dialysis is 40%. On August 6th he was finally strong enough to have surgery to remove his shunts and try to figure out his LUTO.

Around this time Oliver received his official Prune Belly Syndrome diagnosis. Although this was heartbreaking, having a diagnosis is the path to finding his best treatment plan. The doctors and his family set out to find out what was going to work best for little Oliver and how they were going to do that for him. The Nephrologist was able to walk Violet through a lot of her questions, but the scariest questions will not have answers until he is older. Oliver started to respond to the dialysis and with further testing they were able to pull him off of it and his kidneys decided to function on a low level. Just enough to produce urine, but he still requires several medications to survive. It was a long road with lots of ups and downs, but Oliver is a fighter and he started gaining weight and being the wonderful baby he is.

The nurses trained Violet to be his at home nurse, for his necessary 24 hour care. She learned how to clean his catheter, do rolling diaper changes because he is so fragile, clean and replace his Nasogastric tube (NG tube), give fortified feeds through his NG tube, and how to correctly administer his medications and shots. Oliver got to go home on September 23rd at 3 months old. That weekend they were able to bring Emelia home as well and they were finally together as a family of 4! Emelia loves her brother and has enjoyed helping mommy as much as she can with Oliver. Even though they want to stay together as a family, that isn't possible right now with Oliver back in the hospital. On November 2nd Oliver was retaining fluids and was taken to the ER. During the intake interview he had a seizure that lasted for 18 minutes. He is now admitted at Children's Hospital Los Angeles in their Pediatric ICU with kidney failure. They are performing tests and monitoring him to decide their plan of action. They have discussed putting him back on dialysis. We will update as more information becomes available.

A sincere thank you from all of Oliver’s loved ones for the support this family needs right now. 

  • Alexandre de Matos 
    • $200 
    • 6 mos
  • Arielle Wyatt 
    • $1,095 
    • 14 mos
  • Aida Mashouf 
    • $20 
    • 16 mos
  • Dasha Chap 
    • $50 
    • 18 mos
  • Meache Hudson 
    • $10 
    • 18 mos
See all

Organizer and beneficiary

Camille Lisa Ohira 
Ventura, CA
Violet Smith