A mother whose son was born with a rare condition had to deal with her own battle with cancer while still not knowing whether her son would survive.
This is the emotional story of Lorinda Mamo, whose son was born with prune belly syndrome and chronic kidney disease. But his six-week stay at Mater Dei Hospital’s special unit for children was only the start of the ordeal for the family.
Lorinda was diagnosed with an aggressive form of breast cancer and had to undergo her own treatment while her son, Henry, was going through his.
“And just like that, there were times when I was in one part of the hospital, and my son was in another. Needless to say, I was devastated, and the months were hard beyond belief.” Dayna Clarke reports.
“Just after I gave birth, the doctors whisked my son away from me, and I knew something was wrong, very wrong. In fact, I didn’t even see him until the next day.”
It is a situation no mother would want to face, but this was the challenge that Lorindo Mamo had to deal with when her son Henry was born.
Immediately after birth, Henry spent six weeks in the NPICU, at Mater Dei, where doctors diagnosed him with Prune Belly Syndrome and Chronic Kidney Disease. A lack of abdominal muscle characterises this syndrome, and as a result, other organs in the abdominal area are also lax. No one was aware of the syndrome until he was born. As Lorinda recovered from her c-section with her husband by her side, he explained to her what was happening around her as Henry was in the NPICU.
“After five days, they told us that my son and I would be discharged. We got home and after one hour we got a call to tell us to take Henry back to the NPICU immediately. A final blood test before his discharge revealed a potassium level of 7.5 (a person’s heart stops at 10). He then remained in the NPICU for six weeks. I visited him three times a day to be there as much as I could to bathe him and feed him. I felt my heart being torn out each time I left him. Test after test was carried out. There were often days when we were told that they were not sure if Henry would make it to the next day. We were even sent to bereavement counselling to prepare us for what was thought to be inevitable. After six weeks, we took Henry home and had to visit the hospital every fortnight for blood samples. He had so much medication that his room looked more like a pharmacy instead of a nursery. This was not how I imagined motherhood.”
“We were also told that it would be very difficult if not impossible for Henry to sit up or even walk, but he did both. After many tests, it was concluded that one kidney had little to zero function and the other kidney only about 15-20% function and Henry would eventually need a kidney transplant.”
When Henry was around 15 months old, his doctor informed the family that he was doing very well and that they could extend the hospital visits for his blood tests to once every six weeks. They had just started to settle down and regain an element of normality when the unthinkable happened. Two days after the appointment with Henry’s doctor, Lorinda found a lump in her breast and was diagnosed with an aggressive form of breast cancer.
“I had surgery to remove the cancer and lymph nodes. Doctors were anxious about the diagnosis as they weren’t sure how much it had spread. Tests showed that although ten lymph nodes were removed, only one had been affected – I had caught it early. We were devastated, and until I recovered from surgery, I couldn’t even lift my baby. My oncologist wanted me to get maximum treatment (chemo, radiotherapy hormone treatment), but nothing stopped me from doing everything I needed to take care of my son.”
“And just like that, there were times when I was in one part of the hospital, and my son was in another. Needless to say, I was devastated, and the months were hard beyond belief”.
“In August of the that same year, Henry was admitted to MDH for the another surgery. There were complications, and he was transferred to the NPICU – things were not looking good. It was also very dangerous for me to be in the hospital since I was immune-compromised and still undergoing my chemo, but nothing stopped me from being with my son. Then every parent’s worst nightmare occurred, his doctor asked me to prepare Henry’s passport and for my husband to make arrangements because they were going to fly him to the UK for emergency surgery. I broke down, and when she told me that I would not be able to go with him since I was at risk of infection myself, all I felt was pain shooting through my entire body.
“This could not be happening! As we made arrangements, Henry’s surgeon who was in Malta from Great Ormond Street Hospital informed us that he decided not to send him to the UK and they rushed him in for an emergency surgery. (To this day, I think they thought he wouldn’t make it if he had to wait much longer) He was becoming septic and the medical team did everything here in Malta. Due to his condition, his ureters were lax and distended when his belly was inflated during the prior surgery, the ureter kinked on itself, and he could not urinate. We put him into the hands of the surgeon, with all the unknown and heart wrenching fear of what the outcome will be. His surgeon resolved the issue by bringing his ureter to the outside of his belly.
As the months went on, I carried on with my chemo, facing my own journey. All I wanted was to get better and return to my role as a wife and mother.
Early in November one day, Henry was admitted to the hospital again, and after days of fever and becoming resistant to antibiotics, doctors could not figure out what was wrong. Still, it was very dangerous for me to be with him and I could only stay in the room with a mask and was not allowed to hold him. It broke my heart to see him like that and not be able to comfort him. I had only one chemo session remaining, and I needed to stay infection free – and no one knew if Henry was contagious or not. Tests and scans showed his non-functioning kidney had become infected. He had another surgery to get it drained along with a bag on his back. Imagine that with on an 18 month old child. He was discharged after 17 days - on my birthday. We got to stay home for ten days and returned for surgery again in December for his kidney to be removed. The operation was a success.
Henry’s medical team monitored him very closely after this as he was now living with one kidney. About and year and a half later results showed that his kidney was now in end stage renal failure. We continued travelling to the UK for tests and monitoring and to begin working up to his transplant, however, the issue of his previous life saving surgery needed to be resolved. He needed major surgery to create a channel to his bladder which would allow us to catheterise him and keep him safe. This too came with its post surgery complications and lengthed stay in the UK, but we got through it. Time was ticking and we needed to make sure he got to go to transplant before needed to go on dialysis. After months of tests, my husband was cleared as a living donor. The years had been extremely challenging for us a family and so much for my husband who had to watch both of us going through so much. He came close to losing us both, but yet did what he could to hold everything together while we got better, and only leaving our side because of work.
Lorinda realises how quickly our life can be turned upside down. Positively Henry completed a kidney transplant operation in London two years ago, and Lorinda is now cancer-free.
Despite being a very successful transplant. Henry had infection after infection resulting in hospitalisation and antibiotics after antibiotics until we got to a point where he was becoming resistant to everything. We were terrified. In the year post transplant Henry had been hospitalised 17 times - at least once or twice a month. After the continued care and determination of his medical teams locally and in the UK we have found a management plan which we are vigilant with.
We couldn’t have made it through those difficult days without our loving and ever so supportive family (who also have to deal with our illnesses) – I can never thank them enough. We still have a journey ahead of us, but we will take it in stride and be grateful for every day we have.
If you don’t know Henry’s story, you’d never guess he’s been through so much in the past seven years and this is true for many rare diseases. Given the right management and support system we get through our days the best way we can to give Henry the best life possible.”
Despite providing constant care to her son who requires a catheter every 3 hours, plus medications and treatments, fearing even a common colds and bugs, as well as the prospect of the kidney being rejected, the family try to maintain some normality, with Lorinda managing her creative studio and using her popular blog to channel her energy.
You can follow her on www.abirdwithafrenchfry.com