Melissa's Story


Hello, my name is Steven and my wife's name is Stella, we would like to share with you a story. This story is one of love, beauty, horror, true life nightmares, tragedy, sadness, tears, shock. there is one thing that kept it all together and got everybody through to today and thatís the Beautiful LOVE and support within our family and as time went on we found that there are a number of people out there that really do care and offer the support that we all need in these and similar times.
Melissa has a brother Matthew and sister Emily who spent allot of time with Melissa and had to unfortunately go through this horror at a young age where they struggled to make sense of it all and had trouble adjusting to their sisters new outlook on life.
Melissa also has her grandparents Bob and Barbie (pumpaa and mummaa) they were the irreplaceable support through this time and fought the fights by our side.

Melissa was born on the 12th of May 1994, two weeks early, she was induced because her Mums hips were causing problems and apart from this and that the birth dragged out over 4 days, the pregnancy went well.
When Melissa was born, the doctor gave her a quick wipe over, wrapped her in a blanket and then gave me my new daughter. Melissa's eyes were wide open and looking at me, she was a perfect healthy baby. Melissa was a contented baby and slept through the night and day just waking for feeds and playtime. Every thing was going wonderfully for us, we were all very happy. We did notice that Melissa had some unique birthmarks but we were told that they might not be a permanent mark as they may fade away as time goes on.

Melissa was 9 months old when she had a temperature and started to have a seizure. We thought this was a Febrile Convulsion as Matthew and Emily also had febrile convulsions when they were young, so we put her in the bath and started sponging her down, after about 5 minutes there was no change so I rang the doctor, The doctor arrived, (5 mins after we called) Melissa was not responding to the bathing so the doctor called an ambulance and she was taken to the local hospital. They controlled the seizure and Melissa recovered well.

We then made an appointment to see a Pediatrician as advised by the emergency department, and at this appointment, he noted Melissaís head size was slightly larger than normal and also white lesions on her back, hip and on top of her legs . The doctor told us there were a few possibilities so we were referred to a larger Hospital to see a pediatric Neurologist and a Genetics Specialist. After Catscans, EEG and Blood tests, we returned to the Pediatrician for the results. In less than 1 minute our lives changed from perfect to total devastation through the shock and horror that our perfect little daughter Melissa was a victim to the ugly side of nature. Our Perfect little Angel had a Disorder called Tuberous Sclerosis with no cure and no predictable future. We asked every question we could think of and read every thing we could find on T.S. We prepared for the worst but never in our wildest dreams did we expect things to turn out the way they did. Melissa was Diagnosed with Mild T.S. She has 2 possibly 3 tubers in her Brain said not to be causing any severe problems, 1 in her heart causing no problems and reducing and one in her kidney.

Melissa continued to grow and learn very well. She had approx 8 seizures each time with amazing recovery. At least 50% of her seizures were life threatening. The times we watched our little Princess on the Emergency table all a motley grey and blue skin colour with doctors saying things like "Melissa is gravely ill and we are doing the best we can to save her". After having these seizures she would bounce back very well and advance so much in her learning, it was amazing. Things like before the seizure using a bottle after the seizure not wanting a bottle, the same with the dummy (pacifier) after the seizure Melissa asked if we could through it in the bin. after the second to last seizure Melissa decided that she didn't want nappies anymore and she wanted to go to the toilet, she was not happy having to wear nappies at certain times and to bed. These changes took place from the time we got home from the hospital not a week or month later, but the day she got home from the hospital, it was really a strange thing to see and became something to watch, what will Melissa do next time. If we only knew.

At the age of 2 years old Melissa could say the Alphabet, count to 16 and knew the words to 10 songs , which were all adult songs, from Deni Hines, T.L.C, many country music songs and in addition children's songs (Bananas in Pyjamas her Favourite ) Melissa had Microphone handling ability and worked well to camera or audiences with facial expressions and hand gestures that suited the songs, a real talent. Melissa was fully toilet trained as well. Her speech was very good, she knew all body parts and loved singing and dancing, she was well above her age mentally.

It had been 7 months since Melissa had seizured and we were so hopeful for her future even the doctor said her future was looking good. She was 2 and a half and sleeping in the lounge with us while we watched TV, as we watched Melissa every minute that we were awake, which was about 19 to 20 hours a day since her first seizure. Melissa woke up about 11pm on the 4th of November 1996 we will never forget. She was shivering, so I took her to our room to put her in bed and asked if she wanted her quilt on to keep nice and warm but she said no she wanted to go to the doctor, she said "Doctor make Melissa better" We then dressed her and put her in the car and Stella (her mum) said "see you later and I love you". Stella had to stay home with the other children until Grandpa arrived to take over. Melissa said her last spoken words to her mum and said "I LOVE YOU MUMMY and I AM FIGHTING MUMMY" Melissa talked to me on the way to hospital and on the hospital bed in Emergency she was singing a song to the nurse and 10 to 15 minutes later in the middle of her song Melissa's eyes dilated and her limbs went stiff she was having a seizure.
The doctors controlled the seizure as always in the past. Due to the amount of drugs it took to control the seizure she had partial lung collapse so they transferred her to a larger better equipped hospital to Intensive Care. Melissa kept a good colour all through and had no shortage of oxygen to her brain. She was put on a breathing machine and next day had a Catscan which showed every thing was ok no Brain swelling.

In the ICU was a registrar doctor, For some reason the doctors decided that Melissaís Tegratol doses must be canceled so thatís what they did stopped it cold. We fought that decision and told them it goes against everything we have been told and that we have read in our research of T.S. they said it is ok and they are stopping it, no more will be given. Someone had then written CANCELED across her medication records.
The next day Melissa had a couple of breakthrough seizures and the registrar told us that they were not seizures but like an aftershock from an earthquake, I suggested the cancellation of the Tegretol may be the reason as Melissa was on a high dose and then stopped cold, he said no it is just her brain settling down after the initial seizure. He then told us Melissa was to be transferred to a ward, I could not believe this as it was so wrong to cancel one of her medications, see breakthrough seizure activity the next day and then send her to a ward. he started to get the nurses packing up her stuff ready for the move so I found the doctor in charge of ICU and told him what was happening and my thoughts on what was happening and he said Melissa could stay in ICU. Three more times the registrar packed her up and each time he was stopped. Sadly the head of ICU went home about 4.30-5pm that day, before he left he promised me that Melissa was staying the night but if no improvement this time tomorrow they would re-asses her stay in ICU and within about 45 minutes of this doctor going home Melissa was moved down to the ward. We kicked up a reasonable amount of disapproval and tried our best to stop the move but with no avail, the best we got was a promise that Melissa would be transferred immediately back to ICU as soon as there was any further seizure activity. I thought well thatís the best we can do that will have to do, I knew more seizures were coming so we would be back before midnight, I was sure.

Melissa was then taken in to the lift where the bed was jolted going in to the lift by the difference in the floor of the building and the slight difference in level in the lift, at this time Melissa winged and kicked her legs like a tantrum (kicking one leg at a time rapidly) and settled in the lift. When we got to the ward the nurses were doing their change over so we had to wait in the corridor until they were ready, there it was the next seizure, I then got one of the nurses and told them that the registrar in ICU said she would be transferred straight back if she had a seizure, the nurse said we will get her settled here and then see what they want to do. Melissa was put in a room with one nurse on 4 children, this means that Melissa would have more than 75% of time without a nurseís supervision as there is so much time taken up with them going out of the room to get this and do other things. Luckily the nurse that we got used to be an ICU nurse at a different hospital and she sat down with us to find out about Melissa. I asked her so what were you told about Melissa in your nurses handover so you can care for her, she said she was told that Melissa had a seizure, and THATS IT, the nurse wasn't happy to know that Melissa hadn't yet recovered and I told her about what had happened since we got to the hospital and she went and got permission to care for Melissa one on one. About this time Melissa opened her eyes and looked at her mum and said mummy and then went back to sleep.
The first thing the nurse did was make a seizure chart to note any activity. I also told her that Melissa was supposed to be transferred straight back to ICU if she had a seizure and at this stage she had 2 in the ward, after checking at the nurses station she told us there is nothing they could do until the morning when the medical team come around.
I was not happy with that and didn't believe there was nothing that could be done but as the nurse knew what she was doing and was keeping a seizure chart I thought we could wait.
There was about 9 seizures that night.
The next day was a stressing day waiting for the doctors and at this time Stella and myself went home to get our first few hours of sleep since it started and Melissaís grandparents were sitting with her, we never left her for a minute. just after we got home Melissaís grandma rang to let us know that they were still waiting for the doctors but someone else had come around and just wanted to confirm some information that I can't remember at this time,
when the doctors came around they said they would get an eeg to see if it is seizure activity. later that afternoon the doctors, this time one of the leading pediatric neurologists came around and said it looks like there is seizure activity but they are not sure if it is or not,, in the medical notes it stated seizure activity present on the eeg report, anyway he ordered 5mg of a drug that apparently was used allot for jetlag. well it was time for me to get a bit uptight and voice some concerns as 5 mg of this drug wasn't going to do anything for her and at the time this neuro was with Melissa she was showing signs of status epilepticus where she would have a seizure when ever there was a considerable noise or someone bumped her bed, he even tested this and saw it to be happening yet still left her to continue without further treatment or going back to ICU.
Through this day Melissa had around 20 seizures all increasing in frequency and severity up to the point of status epilepticus when she was still left and it was only a couple of hours later being in status all this time that it turned in to a continuous seizure. When this one didn't stop after about 10 minutes I alerted them that it was now continuous
and they casually said ok we will get a doctor up from ICU to asses her, an hour later a doctor came and said yes and then got another doctor to check her, well the fourth doctor was from ICU and said they would organise someone to take her up there, I then told them if they don't take her now I will and after a mildly warm discussion the doctor from ICU and a couple of nurses and of coarse Stella and I took her straight up there. We did discuss on the way the reason why 4 hours ago she wasn't getting some treatment to stop the seizure and I got an earful of doctor hospital jibba jabba.
It then turned in to a debate over their ides on gradual treatment and my idea on severe intervention on this seizure that had been going for 4 HOURS, they said she had alot of drugs in her system and had to do it gradual, I said take a blood test and work out the maximum you can give her, he then said that he couldn't do that, what was I to say.

We then had 5 days to sit by her side watching her seizure and as it went on it appeared to be continuing but it appeared to be weaker in intensity, I think this was a sign of the extreme damage that had occurred. On the 6th day in ICU they then decided that gradual wasn't working so they decided to induce a coma to stop the seizure, am I wrong or is this an aggressive treatment that should have been used to stop a 4 hour seizure, or something similar could have been done maybe not to this extreme at an earlier time.
Many hours later the doctors told us that the coma had become to severe and her organs had started to shut down and they had to bring her out of the coma ASAP. while bringing her out of the coma they had to do hourly blood tests to monitor the situation, as the hours passed by, her hemoglobinís were so low that she needed a blood transfusion or she would not make it though the night, we agreed to the transfusion and were then told that if she makes it through the night it would be a good sign and if the need to resuscitate should arise do we want them to resuscitate or let her go, in complete shock we said of coarse resuscitate. This was the heaviest night of them all.
Well Melissa made it through the night, not that we could see any difference but the doctors said she has allot better chance of being ok now.
over the next couple of days we just sat with her holding her hands and looking at all the drips tubes and old spots where the vein had stopped providing the access needed, a total of 29 in her arms legs hands feet and neck.
It was like it was a wind down time, it wasn't but it was almost like we knew it was time to accept the possibilities that before we could not conceive. then unexpectedly the registrar kneeled down behind us and said "we wont make that mistake again" Please don't email and ask me how I didn't turn around and hit him because I have no idea. all that could come out of my mouth was , whatís that, he replied "transferring her out of ICU to soon" I bit my tongue and said nothing.
Another eeg was done at this time and it showed massive swelling so they did what they do and after a day or two we were transferred out of the ICU down to a different ward and let me tell you this is the day that nearly broke me, we got there and it was so noisy and kids running around and it smelt like a 30 year old barn yard, the windows were leaking fumes from the birds that perched on the sills outside and the whole feeling in there was like it was over, we have lost our angel as we knew her and they have stuck us in the barnyard with allot of kids running around. It didn't take long for me to stir up a transfer to another ward, not to mention they only knew she had a seizure and didn't know anything else. In the next ward it was better but still didn't know much about her only about the seizure and at this stage Melissa needed suction as she wasn't swallowing and had no gag reflex, well this is were grandma jumped in and taught herself how to do it really quick because when I asked at the nurses counter they told me they don't have anyone on the ward that can do it, anyone would have thought I had asked them to remove an organ, and thereís grandma in there saving her life while the ward takes over an hour to get someone to do it.

One day in the ward Melissa's grandparents were sitting with her and Melissa's Aunty Belinda was in visiting and when Belinda was leaving Grandma asked a nurse to sit with her and asked her to promise not to leave Melissa while they went out to see Belinda off, then they would be right back. grandma had put pillows down each side of the bed so if Melissa did wake up and start to move around then she couldn't hurt herself, Melissa had no pillows under her head as she was quite comfortable in that position laying on her back. When grandma got back Melissa was face down in to a U-pillow, grandma quickly turned Melissa over and picked her up, Melissa's face was all motley blue coloured and she was hardly breathing. Grandma was after blood, the nurse had laid Melissa on her side and left her alone and Melissa had somehow rolled on to her tummy and as she wasn't moving at this time Melissa must have just rolled with gravity pulling her off balance. it took about 5 minutes for someone to check Melissa properly and by this time Melissa had gained colour again, grandma was going off and they threatened to get security to remove her from the hospital so grandma went and lodged a formal complaint that lead to a meeting with the nurse crying and apologising, they said that grandma should not have yelled at the nurse like she did and grandma refused a return apology.
A few weeks later there was a press release on the radio from that hospital stating it was very dangerous to use U-pillows with babies, hmm don't know if it quite told the story but it was a valid warning

Everyday was a struggle with things like nurses and doctors washing their hands before tending to Melissa and also nurses leaving fingernail marks in her back, Melissa also had a drip that had a safety line to fill to and one nurse filled the bottle which was 50% more than the safety line so she didn't have to do it as often. I asked a doctor about the lack of knowledge passed over to the wards when coming from ICU and he said quietly "thatís Normal".

Coming to the end of our stay at this hospital we had another catscan and the result was that Melissa had generalised severe brain injury, the size of her brain had actually decreased from original due to the amount of damage. We organised an appointment with the Neuro to find out what to expect,, his words were "this is Melissa now get used to it" we asked what recovery to expect and also life span and he said "we don't expect any recovery due to the amount of damage and expected her to live maybe 2 or 3 years",, we were again in shock,,

As soon as Melissa was stable enough for our local hospital to care for her I insisted that she was transferred immediately, on the last day at this hospital we met with different doctors that had different stages of her care while in the hospital so we could ask questions and see what we would have to watch out for and basically how to care for her and maybe even find out what went wrong and when we walked in they had their legal team there to completely ruin the meeting with everything being said carefully and also the legal team jumping in to answer many questions, it was a complete waste of time for us when we really needed some advice
our local hospital was great, we had many conversations with the staff about what we had been through and they were shocked, we spent a total of 3 months straight in hospital with Melissa and it is something that we wouldn't wish on anyone, at Christmas the local hospital moved a few patients around to enable our entire family to have a complete section of the ward to ourselves for Christmas day and we were able to close the doors and have everyone together on that special day without Melissa missing a thing. by this time she was awake more but eyes locking straight up or to the side or just looking around with no sign of what Melissa was seeing or hearing, almost like a coma with her eyes open.

In January Melissa went back to the bigger hospital to have a gastrostomy and a nissens fundoplication, as this was a surgical procedure I requested that they splint Melissa's arms just incase she started to move around and grabbed the tube, I didn't expect it but I am always trying to think ahead to prevent problems, and I also spoke to the head of ICU and requested that she stay in there for 3 days to make sure everything was good with the operation and just to give us piece of mind. well the operation went well until we got back to ICU, guess who was there,,,, the registrar,, well the next day he bought his son in and he was running around a little, (in ICU) I can't be wrong here he shouldn't have his child in ICU running around, or was it to rub us up the wrong way, then guess what,, yes he tried to get Melissa transferred out of ICU after the first night, well we won that one Melissa stayed the 3 days.

After we were home with Melissa, I think it could have been somewhere close to 12 months we decided to look in to the possibilities of suing the hospital. Unfortunately our case was driven in to the ground. We got a solicitor and we basically needed a pediatric neurologist to back our claims of neglect and we were sent to one to get a report and when I read his report I was stunned to find that he had very obviously not taken any notice in what I had told him and went strictly on the information in the medical notes.
I thought well thatís just not right so I did a report on his report and pointed out everything I had told him and also the parts in the medical records that backed up our claim, he wrote another letter stating that he would not change his report.
I later found out that he was a, or the leading pediatric neurologist for the medical boards defence, any further reports had to be accompanied by his report, that made it very difficult with his high standing in the medical community.
In a later conversation with the solicitor he mentioned how these cases worked and how difficult they are to get anywhere and he knew this from when he was on the medical board. This didnít click to me for a year or two and now I guess I realize that our case may have been railroaded in to the ground from day one. This deeply saddens me and I wonder how it can all work with so much corruption in the system, I didnít want to get rich I just wanted to get something set up so one we could care for Melissa and her needs, as the system doesnít cover everything and as time goes on it just gets more difficult, secondly I would have liked to create some kind of impact to the hospital insurance and therefore applying pressure from the insurance company to the hospital to improve the standards that failed Melissa and the care that she should have got. We still have plenty of time yet but I have lost interest in the battle and have just been getting on with life and ensuring that Melissa had the best possible that we can provide and all the attention and love that we can give her

In just a couple of weeks, Melissa went from an above average mentally well adjusted very happy and active little girl to being only able to sleep and stare in one direction. We could not accept this when we were told and thought Melissa was expected to have a full independent life and the main possibility was she may have learning difficulties, slow right down or stop learning in the future. We were not concerned as we knew even if she stopped learning, she already could talk , walk , eat , drink and go to toilet by herself etc. This was not supposed to happen.

Melissa is totally dependant on us 24 hours of the day and we now watch her every minute, day and night. She now has Cerebral Palsy and feeds through a tube, directly into her tummy with a gravity feed line and bottle, as oral feeding is not possible. Melissa also had to have a gastrostomy because the dieticians at the larger hospital were trying to feed her a quantity recommended in a book, they didn't listen to us when we said she didn't eat that much before the brain injury and now with her not being active they were over feeding her to the point of dry reaching and bringing up her feed. It is one of the hardest things when they don't listen, you know what they are doing is wrong and they go ahead and fix it in their way instead of considering that hmmm could the parents be right. I have included information about gastrostomy and the Nissens Fundoplication on this site, when you see what they had to do just think if you feed someone less and it stops them from being sick, would that be worth a try first. Melissa unfortunately did need the Gastrostomy but possibly not the Nissens, it would have been nice to try feeding her less first.

Check back from time to time as I plan to have a short story from Emily and Matthew on their feelings and a bit of a description of their experience going through this with their sister Melissa and what it was like for them growing up in our family constantly making decissions based around Melissa's care.


UPDATE 26th MAY 1999

Melissa is now 5 years old and she IS still fighting hard for her own recovery with our help. It's a slow and long road to travel but well worth it. Melissa now smiles and giggles, she is aware of us and she is trying hard to talk. her emotions are showing again and she communicates in her way and we are happy to say that we have picked up muffled words like Daaad, Muummm, hungy (hungry) Yeahh (yes) and a few others, She nods yes and shakes her head no and sure gets us to understand her now. She brings us so much joy , she will never give up and nor will we. Her mind is starting to work well but her body is not yet, although, she can now wipe her eyes when she is tired and suck her fingers all the time which is becoming a problem for us to solve, she also scratches her head and plays with her hair, and loves her play time. We will never give up hope. If you have any questions we would be glad to answer them as best we can and would love to hear from you.

Melissa's 11th Birthday

UPDATE 4th March 2007

Well Melissa will be 13 in May and sadly there has been very little change from her 5 year old update above, but this is also a good thing as Melissa is very very happy and healthy. Melissa rarely says anything like we began to see but the occassional muuuum pops out (U.S. translation moooom) haha sorry.

UPDATE 17th January 2008

Melissa is still very happy and healthy, unfortunatly Melissa has been having a form of stare seizure and when she does she drops her head and faces to the left and her right arm flings out to the right, her body tenses up and it lasts for about 10 seconds to maybe a minute and then its the tired session afterwards, they don't seem to hurt her or have any ill effect but they are just not to nice to see, I would like to get one on video but when they start the last thing we think of is the camera, we just want to comfort her.

UPDATE 20th July 2009

Melissa has been going well, pretty healthy and very happy, Unfortunately Melissa has quite a bit of cuviture of the spine, we have an appointment later this week and I am praying with every bone in my body that Melissa doesn't have to have the metal rods inserted in to her back, I am not sure how I would get through having to watch her go through such an ordeal. How traumatic would that be for our little angel, I know how much she can fight and I know she can get through it but to me the pain of putting her through that would be so much worse to me than the initial brain injury.

But anyway, Melissa is so beautiful and so happy, what can I say, Melissa is absolutely loving going to school and watching everyone she is very nosey and likes to see what everyone is doing. Her absolute favorite past times are watching tv holding our hands and playing and also driving around in the van

Update 25th April 2013

Melissa is 18 yrs old and about to turn 19 next month, Melissa is still going to school and loving it more than ever, but we were told that this is her last year so we have to talk to the school about that and see if we can get another year, Melissa is responding extra well with her current teacher.

We are still having to watch the spine curvature and it is extremely close to having to have something done about it and just the though makes us feel sick to know what she will have to go through, we do know she would look a lot better with it done and most likely more comfortable once all the healing is complete but it is getting to that point that is horrifying, it would be major surgery on her back and that's she sleeps and sits all the time. Melissa is still not talking apart from the odd word here and there but often responds with a nod or a short and rapid head shake with her chin down to her chest for a no, what looks like a no to most people is an excited yes.

Melissa has remained healthy since the previous update many years ago with maybe a few colds and that's about it, her weight is maintaining and we recently found out her bones density is not what it should be but maybe that's a normal scale for kids running around, we are waiting to hear back about it if they want to do some sort of infusion to increase bone density. Turning 18 we now loose someone that as given us much comfort and support, the most important person in Melissa's medical team Dr Smily, he has been like Melissa's Archangel of the real world and we would like to give him the biggest thank you of all, he will be missed but we will try to keep in contact from time to time. Melissa has also lost the comfort of the Variety Club but we understand they are a childrens charity and they have to have a line drawn somewhere and we can only thank them for all their support over the last 16 years. Novita (Crippled Childrens Assoc.) have also been left behind and we also thank them for all their support, but thankfully the new department Melissa entered in to have also been great        Disability S.A.

Our looming battle is with adjusting to the next stage after Melissa does finish school, there are a number of houses around that do provide care through the school hours but being extremely fussy and paranoid parents about her care we now have to somehow find a middle ground between their rules and ours and I think the main one will be Melissa gets there when she is ready because if she is sleeping I let her sleep because she needs it, what a princess haha. we are also fussy about who takes her out and who is driving, who is caring for her obviously, who changes her and how, I am so fussy that her nappy is right and its surprising how many people can't put a nappy on to a satisfactory standard.

Well from here on all we can hope for is clear sailing but we know there will always be rough times but that's life, our big fear now is when we are no longer capable to care for her how things will be and that's a heart breaking realisation to go through and all we can do is just put it off till another day to worry about.

I need to upgrade the whole picture page and how it is laid out but for now here is a picture of Melissa 2012

Also one with Dr Smily on her last visit

Melissa was being her usual I can't do as I'm told attitude when seeing a Dr so Dr Smily helped her look towards the camera.



Advise From Our Experience

To learn anything and everything possible about TS or what ever the problem.

When in Hospitals, if you know things are not going as they should, stand your ground and make sure you are heard, because they have many lives in their hands when they treat 1 person (mothers , fathers, brothers, sisters, grandparents and the rest of the family)


Take Plenty of photos of your children and give them lots of hugs and kisses and a lot of LOVE.

Treasure every moment.



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