Some women never know just how strong they truly are till they become a mum. For Randi Wright, her strength and her love for her son keeps her going despite the challenges.
WORDS CHRISTEL GERALYN GOMES
When Randi Wright went for her 20-week scan, her doctor noticed that her baby’s bladder was not visible on the ultrasound. This was her first clue that her son would be born with a rare congenital defect – bladder exstrophy (BE) – where the child's bladder is exposed through an opening in the abdominal wall.
At first, since the amniotic fluid seemed adequate, and since BE was so rare, the doctor told her that there should be no problems. “A few weeks later I saw my maternal-foetal medicine specialist (high-risk OB), as I always do during my pregnancies, who also did an ultrasound and we again noticed that his bladder wasn't showing up. I was told that he probably just had a small bladder,” says Randi.
This time, feeling a little uneasy, she
went home and googled “foetal bladder not visible
on ultrasound” and came across the condition.
Realising her baby had all the signs of it and now understanding what a big deal it was, Randi was terrified. “I worried about the outcome, his birth, potential surgeries, and all the hospital stays,” she said.
A Mother’s Intuition
She quickly took the information she had found to both her doctors but neither knew what she was talking about, both insisting that there was nothing to worry about and that her son simply had a small bladder. Randi however, wasn't set at ease. “I thought they'd at least take my concerns into consideration. I thought they would do more in-depth testing and scans. When I found out they didn't think he had it and weren't concerned, it was really disheartening. I felt ignored. I felt like they didn't really care about their patients.” Her intuition being strong, Randi soon felt her disappointment turning into anger. “I didn't understand why they wouldn't listen to me. It was infuriating.”
Other than this, Randi’s pregnancy progressed smoothly with only minor complications and some extreme morning sickness. The caesarean delivery also went fine and it was only after her son Elias was born that the diagnosis was confirmed – he did indeed have BE.
At this point, Randi was shattered and her disappointment in her doctors was more than understandable. “My heart hurt. I was angry again. If my doctors would have just listened to me in the first place, I would have known, I could have prepared. I could have gotten referred to the proper specialists before his birth.”
Caring for a Newborn with Bladder Exstrophy
Unfortunately, now there was nothing to do except deal with the situation at hand. Elias was immediately taken to the NICU where he spent a week. “Caring for a newborn with BE is a lot different than caring for a typical newborn. After the week, he came home with his bladder still outside of his body to give it time to grow for a more successful repair surgery. He was also on preventative antibiotics to combat infection. We had to keep his bladder moist and covered with plastic wrap to avoid damage from clothes or a diaper. We weren't allowed to submerge him for a bath. He couldn't even do regular tummy time,” Randi explains.
Randi did her best but like any mother suddenly
put in such a situation, she suffered through anxieties that
no new mother should have to experience.
“I kept wondering how I was going to be able to take care of my child with an organ outside of his body. I had to carry plastic wrap everywhere we went. It was what we used to keep his bladder moist and safe from injury and we had to use saline to clean it,” she adds.
Bringing home a healthy newborn can be overwhelming for many women, but in this case, ‘overwhelming’ was truly an understatement. “My biggest concerns and worries were mainly all the surgeries. I knew the first one entailed a lengthy hospital stay. I also worried about problems he would have later in life. I worried about his quality of life. I worried about potential health risks. I worried about things no mother should ever have to worry about.”
When Elias was 10 weeks old, it was time for an eight-hour long surgery to repair and close the bladder. Randi describes how she felt: “My emotions and feelings were all over the place. I was so scared for him. It's always scary when your new baby has surgery but the fact that his was eight hours and such a major surgery made it even scarier. There were so many things going on in his surgery it made my head spin. I remember thinking I just wanted to be with him. Every hour that passed I grew more anxious.”
While the surgery went well, seeing the way her son looked after was heartbreaking. “He was grey and swollen, on a ventilator and sedated with a cast on from the tips of his toes to his hips. He had so many tubes coming out of his tiny body. It was so hard to see. He didn't look like the same baby. I couldn't wait to have the sedation lifted and the ventilator gone. I wanted my baby back to his normal, smiling, happy self,” said Randi.
Soon after the surgery, doctors realised that Elias had
renal hypertension and was having trouble
bringing his body temperature back up. Special equipment
was urgently needed to help warm him up.
“He also stayed on the ventilator longer than most kids with his condition. At about one to two weeks post-op (while still inpatient), Elias developed complications from his epidural. “The epidural was causing him to be extremely sleepy, puffy and ‘out of it’, so I, along with his anesthesiologist, made the decision to pull it," says Randi. Thankfully, once they removed it, Elias became visibly better.
Life Now and the Need for Lifelong Care
Today, Randi says that there are good days and bad days. She tries her best to ensure that Elias lives as normal a life as possible for someone with BE. “He does not have normal bladder function – he is incontinent and unable to hold a full bladder. This will be fixed in the future. He also battles urinary tract infections and hip and pelvic issues – people born with BE are born with an open pelvis, which tends to cause issues as well. He has trouble walking and staying balanced.” She adds that right now, it’s hard to tell what he will or will not be able to do. “Lifelong care is absolutely necessary. He requires care from not only a urologist but also an orthopaedic surgeon and a nephrologist.”
Despite the hardships, Elias is the light of Randi’s life. “My biggest joys are watching him overcome battles he faces and still be this brave, resilient little boy without any fear. Despite all he's been through, he still manages to be a happy toddler,” says Randi.
The Need for Awareness
Randi now writes stories on her experience with BE. Spreading awareness of the condition is important to her because BE is so rare.
As a parting word of advice, Randi hopes that other parents who are going through a similar situation will stay strong. “Don't lose hope. It's fixable. It's manageable. There may be lifelong complications but it is not a death sentence. It's a tough journey but you are about to watch the bravest, strongest person you'll ever know fight with all their might and win. BE kids are so resilient. You've got this.”