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MARTEN'S PROGRESS

Marten's story and his struggle with cerebral palsy
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MARTEN'S STORY

Marten in a ventilator at Wishaw General Hospital the day after he was born.
Marten was born on Tuesday 14th December 2010, at 23:59 hours in Wishaw General Hospital; he weighed a mere 960 grammes (2lbs 2ozs). By that time we knew that things were going to be difficult - but how little we actually knew!

When we first had the pregnancy confirmed, you can imagine our surprise when the nurse told us that there was not one but TWO babies - twins! Not only that, but the twins were sharing the same placenta; meaning that they would be identical. We were overjoyed; but that was only the start of the problems!

A few weeks into the pregnancy and the consultant at Paisley RAH started to tell us about a condition called "twin to twin transfusion". Basically, the blood vessels supplying the babies from the placenta become crossed, resulting in one baby receiving first call on the blood, oxygen and nutrients and the other getting what's left. The condition apparently only occurs where the twins are identical. A few weeks later the condition was later confirmed - Marten's battle for life and health had just begun.                                                                                                                 
THE FIRST FEW WEEKS

Though still tiny himself, brother Erik, born just 3 minutes before Marten and weighing in at only 1,360 grammes (3lbs), looked so much bigger and better developed than his brother. "The twin to twin transfusion" meant that both boys had to come out at less than 29 weeks, some three months early, but Marten had been the donor twin in this relationship meaning that he was so much less developed than Erik.

Knowing that the boys would be early, the doctors had given mum steroids to help develop the boys' lungs; but this was about all they could do to help prepare them for life outside the womb. Marten's problems with his breathing were to haunt him in the months ahead, such breathing problems are a common feature amongst children with cerebral palsy.


You can see just how small Marten was by comparing him to the size of mum's hand.




















Marten spent a total of 
4 weeks at Wishaw. During that time it emerged that he had multiple complications. The most life threatening of the conditions was his never-ending battle with infection. Marten's infection counts would have been enough to kill a horse, but somehow Marten managed to pull back against them. Marten was unable to feed and he received TPN (total parental nutrition) through a line into his blood stream. His worst infection happened when a line which went directly into his belly button turned septic - he nearly died!

Marten's oxygen requirements went up and down minute by minute. He had many different types of machines all pumping oxygen into him, as much as 8 litres a minute. His whole condition fluctuated wildly. Nursing staff tried to reassure us; they warned us that his condition would vary on a day to day basis. With Marten it was minute to minute. One minute he would appear to be fine, the next alarm bells were going off everywhere. 


Marten at Wishaw, a collection of lines, needles, machines and monitors.


Lying in his ventilator, Marten was a mass of tubes and needles. There was hardly a part of him that didn't have a needle and tube inserted in it. We were allowed to touch him through the doors of the ventilator, but the only part of his body without a line in it was his head. So we used to stroke his head as he lay there; the touch seemed to help settle him.

All this came to an end one day when another line, for another antibiotic, to fight another infection was needed. A small section of Marten's hair was shaved off and a needle and line inserted. Our one point of contact with Marten was severed!


Blood gases had to be taken from Marten's heels several times a day making him very sensitive to anyone touching them.


Another constant annoyance for Marten was the requirement every few hours, day and night, to take blood gases. This involved pricking him in one of his heels with a needle (like a diabetic test needle) to make it bleed, then extracting enough blood to fill two glass straws; Marten hated it! It was many months before Marten would allow us to touch his feet - he always associated someone touching his feet with pain.

Meanwhile, the wild fluctuations in his condition were traced to the failure of an artery in his heart to properly close. As a consequence, blood sometimes flowed the wrong way through his heart massively affecting his blood oxygen saturation levels and generally making him unwell. As attempts to resolve the situation using drugs failed, Marten badly needed an heart operation to give him a chance of life.


After 4 weeks mum gets to hold Marten for the first time.


After 4 weeks at Wishaw he was transferred to Yorkhill Hospital for Sick Children in Glasgow. In addition to his heart problem he also had an abscess in his liver; a suspected serious intestinal condition called NEC (which rots the intestines); was badly swollen as a result of severe water retention problems, and dark brown after all ultra violet light treatment he had received for bilirubin.

It was at this point, four weeks after he was born, that mum finally got to hold her second son. Looking back, we know now that he wasn't expected to survive!



YORKHILL 

Marten's arrived at Yorkhill on 11th January. He quickly underwent a whole series of tests, scans, echoes and x-rays. Wishaw were informed that Marten had an abscess in his liver and a potential serious condition in his guts. He was placed on treatment to reduce his water retention and was quickly reviewed by cardiology consultants. The problem was called "Patent Ductus Arteriosus" (PDA) and referred to a persistent opening of the blood vessel between the pulmonary artery and the aorta. 

Marten's operation was carried out on Monday 17th January 
at 3.30pm. Such was Marten's condition that the surgical team performed the operation in the ward to avoid having to bring him to the surgical unit.  The operation was complete by 5pm and at 7pm he was settled. 

Marten after his operation, the scar clearly visible.


Marten's bad reactions to the operation began on the Tuesday; when he had to be heavily sedated, given drugs to raise his blood pressure, further drugs to relax his muscles and have his ventilation changed to a more extreme form. The problem flared up again late on Wednesday afternoon a few hours after his chest drain was removed.

He dramatically dropped his oxygen saturation from almost 90% to less than 30% in the space of two minutes. Only urgent intervention by medical staff brought him back from the brink; his muscle relaxant and additional morphine were re-introduced and oxygen pumped by hand directly into his lungs. An additional x-ray revealed that after the chest drain had been removed a large pocket of air had built up in the chest which had caused his left lung to collapse! 


Marten at his lowest point shortly after his lung had collapsed.



Marten then had a good period of nearly a week when he was being weaned off different drugs; his morphine was being reduced and his ventilation pressures brought down dramatically. He even had his recently introduced milk quota increased. Some of the "puffiness" caused by water retention had disappeared as his kidneys appeared to be working properly again and his muscle relaxant (which had effectively paralysed him for a week) was halted. 


The effects of Marten's prematurity, combined with more than 6 weeks of "intubation" left him with cronic lung disease. His steroids (to help his lungs develop) were now being reduced giving him a chance to come off the ventilator and go onto a less invasive breathing support. 

Marten's run of good luck came to an end a few days later after a second attempt to clamp his chest drain failed. The drain, whose primary task was to allow fluid in the chest to flow out of the body following the heart operation, was also allowing trapped air from holes in the left lung to escape. When the drain was clamped, the air couldn't escape and the lungs were again put under severe pressure. Marten's attempt to come off the ventilator would have to wait!

On Wednesday 2nd February Marten's chest drain was  successfully removed. The very next day he finally came off the ventilator and was breathing with the help of a low pressure thermal vapour machine - Marten was actually doing his own breathing! 

By now more than seven weeks on the ventilator had left Marten unable to cry. We knew he could cry, as we heard him when he was born. The doctors assured us that he should regain his "voice" in about 4 - 5 weeks time. By the afternoon of Saturday 5th Marten had all his remaining vein and arterial lines removed, meaning that for the first time in his life there were NO needles entering his body. All that remained was his electronic monitors and a feeding line, through his nose, through which his milk dripped.
 

Marten and Erik meet for the first time since being separated at birth.



Monday 14th March marked the next big milestone in Marten's life. It was the day that he moved out of Intensive Care and into the Special Care Unit. It also meant that for the first time since the were parted at birth he was able to meet his brother Erik!

Just as it all seemed to be going well another disaster struck. Marten was diagnosed as having Stage 3 of a condition called Retinopathy of Prematurity (ROP) - a disease if it progresses ultimately leads to the retina inside the eye becoming detached, resulting in blindness. Both Marten's eyes had deteriorated to Stage 3 in a short period of time. Surgery was planned for two days later. On 17th March, Marten had laser surgery performed on both eyes in an operation lasting a little more than an hour. It would be several weeks before we knew if the operation had been effective.

On Tuesday 22nd March, Marten finally left Yorkhill Hospital for the Southern General. Without doubt if it hadn't been for the skill and professionalism of medical and nursing staff Marten would not have been with us today! So it was with both regret and some joy that we left. Surely the worst was now behind him. Could it simply be plain sailing from now on? 



SOUTHERN GENERAL AND HOME



Marten's third, and last, prolonged stay in hospital started in the High Dependency Unit at the Southern General in Glasgow. Being Marten he arrived with a runny nose and was immediately placed on yet another course of antibiotics as a precaution.


Erik and Marten share a moment during Marten's stay at the Southern General

It was the job of the Southern General to prepare Marten for discharge. Part of that was moving him onto a reduced number of regular and larger feeds, away from the continuous or hourly feeds that he was used to. In the space of 3 days Marten quickly moved from 2 hourly feeds, to 3 hourly feeds and then 4 hourly feeds - the amount increasing every time. Then the inevitable happened, Marten became violently sick, emptying his stomach contents several times. Marten's feeding problems continued to the extent that doctors placed him back on 2 hourly feeding and reinserted the feeding tube up his nose and down his throat into the stomach. It was only once we left hospital and Marten's feeding and sickness problems recommenced that we were given a diagnosis that Marten suffered from Lactose intolerance and that it was the natural sugars found in milk and other dairy products that was making him so violently sick.


On Monday 28th March, brother Erik shared a room with his mum at Paisley RAH in preparation for discharge. The next day Erik was discharged after 15 weeks in hospital. Marten had started to feed better and a meeting is arranged with his doctor for 2nd April. His weight was now 2.72 kgs (exactly 6lbs) and he is now being encouraged to "suck" feed from a bottle.


The meeting with Marten's Doctor went well. The hospital were concentrating on his feeding, lengthening the time between feeds, and on ensuring that this oxygen requirements could accommodate this. This was a necessary part of Marten recovering his power of speech, lost during the time when he was intubated and the machine was breathing for him. The Doctor confirmed that Marten would most likely be on oxygen at home after he is discharged but that this could be another two months away.


Mercifully, the Doctor had spoken to the opthalmologist who was pleased with Marten's eyes. It would appear that the retinopathy progression has been halted - although Marten will almost certainly need glasses at some point. Marten eventually gets into an open cot - again this is a hugely significant step forward. After pulling out his feeding tube the nurses are asked only to feed him by bottle. Marten is loving this and appears a hungry boy. His oxygen pressure was also reducing.


We continued our ups and downs with Marten until the 16th of May when he was eventually discharged on home oxygen at a rate of 0.3 litres per minute. At last we had both boys home - we were overjoyed.



                           ILLUSIO"Touch but don't look!" - Marten and Erik at home at last.NS SHATTERED


Just two days after Marten's discharge dreams of having a "normal" family life were shattered. We had noticed for a while that Erik was not responding as we thought he should to noises round about him. So on the 18th May Erik went to the Audiology Department at the RAH. To our horror he was diagnosed as being profoundly deaf! Marten had also been booked in to Audiology at Yorkhill Hospital for the very next day. Marten had always reacted to us coming into the room or if we were doing something anywhere near him - surely he was O.K. Sadly, it turned out that Marten too was profoundly deaf the audiologist being unable to record any hearing responses. Apparently, Marten's reactions to events round about him were due to his very acute peripheral vision which gave the illusion of him being able to hear. Both boys were now deaf.




Looking back, whilst Marten was at the Southern General, we had noticed that he had developed a liking for turning his head round to the right and that there was an almost permanent stiffness in his neck. Marten was also significantly behind in his development. We put all of this down to his prematurity and the fact that babies often have a preference for one side or another - none of the doctors indicated anything different. As the months went by we also started to notice that Marten was becoming increasingly erratic in his movements. 


Identical twins - more like "Little and Large"!

By this time brother Erik was happily turning on the floor and rolling over. For a long time we thought that Marten was simply trying to do this too but didn't yet have enough control to manage - he had still not lifted his head. As his "attempts" became more and more aggressive we thought this was probably him becoming frustrated. Marten was also having what appeared to be stomach cramps. Everything we tried had only very temporary effect, sometimes it didn't work at all. So a return visit to the Southern General produced a diagnosis of lactose intolerance and Marten was placed on a specially formulated milk.


Not everything was bad, we were after all still of the belief that Marten would catch up with his brother. By summer the boys were outside almost every day - but it really was a case of "Little and Large"!





                                                                NAMING CEREMONY



We had decided to organise a Naming Ceremony for the boys; so on 24th July, a blisteringly hot day, assembled friends and relatives packed into the Old Library Centre in Kilbarchan. We had made a special photographic record of the boys lives to that date and played it at the ceremony. Family friend, Andy Doig, a Worship Leader, officiated and the volunteers at the Centre pulled out all the stops.







The advent of autumn and the onset of winter only witnessed Marten's situation deteriorating. Inconsolable crying, sleepless nights, what appeared to be stomach cramps. He had changed from a smiling happy boy into a boy who appeared to cry for nothing. There had been no progress on any front. He still couldn't hold his head, couldn't turn, couldn't speak and couldn't sleep at night. He was permanently tired - and so were we. And he was still on supplementary oxygen at the same setting it was in hospital.

No! It's not a junior member of the Klu Klux Klan - it's Marten just out of the bath!


By winter the situation had become even worse. Marten's actions were becoming even more exaggerated. We would take turns at staying up all night with Marten as he simply couldn't settle. We knew this couldn't all be explained by reflux; but reflux was all he was being treated for. Early October his consultant recommended that he have a "trial" period of a muscle relaxing drugs called "Nitrazapam". Mum, a qualified psychiatric nurse who works in addictions, questioned the use of such a drug because of its short term therapeutic value and its addictiveness. The drug was supposed to help him relax and therefore sleep - and we were desperate! It did make him sleep - two whole nights - but he also slept two days as well! After only two nights its therapeutic effect ceased and we were back to square one with a child on a highly addictive drug.



Ten weeks later we were back in front of his consultant again. We really needed to know what was wrong with Marten. Everything being down to reflux simply didn't cut the mustard any longer. Sure he had reflux, but reflux couldn't explain all of Marten's behaviour. The day before his first birthday the bombshell was dropped. They had suspected some 10 weeks ago that Marten's problems were much more profound. All of a sudden the medical professionals offering various aids; special seats, a standing frame etc started to make sense. They all knew what we in our blissful ignorance were about to find out. Marten's battle with cerebral palsy was about to begin!



* * * * *




Footnote: In January 2012 we finally had a diagnosis concerning Marten's lack of a full vocal range. A camera was inserted up his nose and down his throat on a visit to Yorkhill Hospital. Before this was even done the staff heard him cough and explained what they thought was wrong. One of Marten's two vocal chords was not working at all. They asked if he had had a PDA - yes he had. Apparently, the nerve to the left vocal chord runs dangerously close to the heart in the area where the incision is made to close the PDA. The chances were that Marten's nerve had either been severed during this procedure, in which case he would never regain use of that chord, or that it had been stretched, meaning that it could come back. To this day Marten still does not have a full vocal range.