|Since NNFF was launched in 1997, the foundation has become the most comprehensive resource for survivors throughout the world. in this section, we have included actual first hand accounts contributed by NF survivors. Please keep in mind that the images provided on these pages are graphic and often upsetting.|
Frankie Wayne Mould
UPDATE: June 29, 2014
"Your son is the sickest child in the country."
Frank The Tank. My brave little boy who fought of NF at 18 months old. This is his story: "Your son is the sickest child in the country."
This is what we were told as our son battled for his life fighting a rare flesh eating bug at just 18 months old. Frankie, our happy healthy blue eyed boy had became unsettled on Monday 8th April and increasingly he began crying out as if in pain. He kept developing temperatures and although the medicine was bringing his temperature down he seemed to be getting in more and more pain. On Tuesday 9th April I decided to take Frankie to my local walk in centre where I noticed a small boil had appeared on his left thigh. When speaking with the nurse I was advised that Frankie was suffering from a viral infection and that it was important to continue with the medicine and to ensure he had plenty of fluids. Frankie was my second child. There was 20 months between him and older brother Kayne and I knew that this wasn't just a viral infection so I went straight to my local hospital where Frankie was seen by a paediatric consultant. He too advised that Frankie was suffering from a viral infection and Frankie was being sent home when I decided to take it upon myself to physically find the source of his pain because as his mum I knew something was being missed. I sat in the waiting room and began checking Frankie for a response to my touch. I checked every toe , his hands, his feet, legs, arms and then started on his back. He had a dark purple pin prick rash covering his chest, tummy and back. So small that he looked like he had a sun tan. I was worried that this was meningitis but the rash was blanching when it was pressed. So I began examining his back I started on his right hand side and starting from the bottom worked my way upwards and outwards applying gentle pressure and checking for a response from my son. When I got one third of the way up his left had side just out from his spine. Frankie howled out in pain. I had found it. The source of his pain. I worked out there was an area of 2cms round that was agony to Frankie and I quickly alerted the nearest nurse. I felt such a relief but little did I know Frankie would be left without any treatment till the following day in excruciating pain whilst doctors tried to decide what to do. Clueless.
Frankie was in so much pain he would hit me and his screams were piercing. An MRI scan revealed that Frankie had an infection called necrotizing fasciitis and he was transferred to the RVI hospital in Newcastle. When we got to the hospital we were met by over 30 doctors and specialists and we were told that Frankie’s case was so very rare and that the doctors there had never seen a child with this infection to this extent. They were brutally honest with us because they had to be. Necrotizing fasciitis? What does that mean I asked. "Death of tissue or flesh-eating infection" was the consultants reply "I'm very sorry", she said "but this is a big chance Frankie won't make it out if the operating theatre. He is very, very sick."
I had no choice but to consent to my son being taken to surgery not knowing if he would ever come back but it was his only chance of survival. Frankie was delirious and didn’t know where he was he just kept saying "boc-boc" and doing the makaton sign for his bottle. I kissed him on the head and told him mammy loves Him so very much, surrounded by doctors waiting to ventilate him and rush him to surgery. I was in total shock and sat waiting, frozen in fear for 9 and a half hours. The surgeons worked on Frankie until 4.30 am that next day. The wait was the worst for us as we sat in the relative’s room on PICU. Every time the door opened my heart dropped. I couldn't stop crying and I just kept praying and praying to god that he would be okay.
At 4.45 am the door opened and there stood the surgeon and a consultant with blank expressions. They took me and Wayne (Frankie’s dad and my partner) into a side room and the first thing I asked was if Frankie was still alive. "Just" was the reply. We were told he was very, very weak. Too weak for anymore surgery and his condition had to be taken as minute for minute. Frankie had had his entire back, left side and a large portion of his left thigh removed. Everything right the way down to the muscle. He had nothing to keep fluids, etc. in and was critically ill. We were told we needed a miracle for him to survive and on top of this they hadn’t managed to remove all of the infected tissue so it could still continue to destroy his body. They asked if we had everyone at the hospital who needed to be here. I was just in total shock and just wanted to see my baby. I felt cheated. I worshiped my children. They were my life. I never left them with anyone not even my own mum. They were always clean, fed and happy. Yet here I was told my son wasn't expected to make it through the night.
On Monday the 15th of April, Frankie was still alive and still fighting and every doctor involved could not believe this miracle child and said his fight is a tribute to how strong and healthy he must have been prior to this. Why did he develop this deadly infection? He went to theatre with plastic surgeons and had healthy skin removed from his tummy, chest, and legs and grafted onto his back, side and leg. His skin stretched round and pulled in to try to reduce the size of the wound on his back. The surgeons could not believe how strong he was and said he was "one tough little fellow with a very strong heart." Seeing our son in PICU with all his muscles revealed was so hard. The hardest. Something no parent should see. The surgeons couldn't replace the layers of skin that had been lost they could only replace one thin layer of skin graft so his back indented inwards. After five days, the skin grafts had started to take and unbelievably, Frankie was stable enough to be taken off the ventilator. A very scary but emotional moment. He was in so much pain and looked so poorly but to see his eyes again was a miracle. I never thought at one point i would ever look into those beautiful blue eyes again.
Shortly thereafter, Frankie was transferred onto the regional burns and plastic surgery ward and we had to learn to care for our son again. This was so very difficult because we had to be so careful with where we touched when lifting him and changing his nappy. Before now he had a nurse by his side constantly. Now Wayne and I became his nurse. He had terrible nightmares and withdrawals from the medication. His brother, Kayne, who was just 3, visited all the time and would push him around the ward. He had to learn to walk and eat again. The dressing changes were the hardest as he would scream and shake as they peeled his dressings. I trained myself to think "blood is good" something I never imagined in a million years I would have to think but it showed good blood supply to the new skin.
After months on the ward, Frankie is out of the hospital. His skin grafts aren't growing with him and so he needs operations until he stops growing. He is in constant pain and I have to massage cream into his back and graft sites 4 times a day. He has to wear a special fitted pressure garment which is really tight and puts pressure on his scars to try help flatten and soften them. Every 6 weeks, Frankie was put to sleep for painful steroid injections into his scaring to try stop his scars becoming so angry. This Infection doesn't just happen it can be caused by a single bacteria. Group A streptococcus was the cause of Frankie’s NF and the reason he lost all of the tissue on his back. This is a common bug that can live on the skin or in the throat. I was told fewer than one in a million children would develop this infection and were also told there are no public health figures for it. Once NF develops after the strep A enters the body it is a race against time and as a parent, I never knew such an infection existed never mind that a perfectly healthy child could develop it. It can develop after surgery or even through something as simple as a cut to the finger.
One thing is for sure my little boy has the heart of a lion and is an absolute miracle. When he was in PICU we vowed to take him and Kayne to Disneyland in Florida when he was well enough. It is not 1 year 3 months since Frankie fought and won his battle with NF but that was just the start of the journey. The hospital appointments have been endless. The sleepless nights shattering but Frankie has shown great resilience and has adapted to very well. In March this year (2014) Frankie spent a month in hospital after he developed an infection in his skin grafts on his back. He became very unwell and was behaving in an identical way to when he had NF 11 months prior. The rash, the confusion, the swelling (this time on his leg). Hi surgeon took one look at him at took him straight to theatre. He excised a large portion of his graft on his back again down to the muscle and also cut into his thigh to explore the tissue in there. No infection! No necrosing tissue! Thank god but now Frankie faced another extensive, painful skin graft and was in lots of pain. During the night Frankie temp soared and the medical team became increasingly worried about him. He had massive amounts of pus on his tonsils and in his throat. He had to go on 4 strong antibiotics for 11 days with blood tests three times a day. I had to pin him down time and time again while he screamed for the doctors to stop and cried "I want to get better mam".
Once Frankie lab results were improved he could then have his skin graft. After another 4 weeks in hospital we were allowed to go home. It's now June, three months on and Frankie’s new graft has been giving him alot of pain as it starts to thicken and raise up. As well as paracetamol, gabapentin, ibuprofen, piritin and hydroxyzine, Frankie is also now prescribed oral morphine. He is 3 in September. Whenever I speak to doctors about Frankie, it's evident that here in England doctors don't think this infection happens to children. Had more people known about this infection perhaps Frankie would have been diagnosed earlier and extent of the damage wouldn't have been so bad. He needs operations until he stops growing at least. He is pain constantly and as much as we try to give him a normal childhood that's been taken away from us. Here are some pictures of Frankie my amazing little Frank the Tank. We haven't got to Disneyland in Florida yet but we are still saving to give him the holiday he deserves. Please share his story and raise awareness THIS DOES HAPPEN TO CHILDREN!