Ethan was born on the 16th December 2016 at 38weeks gestation, at 11:07pm weighing 7lb6oz (3.355kg). The pregnancy and labour went really and was born a beautiful healthy baby boy. As a family, we couldn’t have been happier, blissfully unaware of the traumatic time we and our brave boy were about to endure.
In the first few hours Ethan was very congested with secretions and rather reluctant to feed, so when offered the opportunity to go home after 6 hours I requested to stay in. By 8am on the 17th, when Ethan was barely 9hours old, an amazing midwife overheard him make a very slight grunting noise and called paediatrics to come and check him over. This midwife saved his life.
By 10am Ethan was taken out of my arms and put into the Special Care Baby Unit (SCBU) where it became more apparent that Ethan was very poorly. It was confirmed our baby had E-coli Sepsis. By 12pm Ethan was on full life support and we were unable to hold our precious newborn baby. He continued to have various tests and x-rays throughout the course of the day. Ethan also had two normal bowel movements which is very relevant to his story.
At 1am on the 18th, Ethan was nearly 26 hours and deteriorating. It was at this point we were called into a private room with the paediatric consultant needing to talk to us urgently. A conversation we will never forget. It was explained to us that an x-ray shown gasses leaking from the bowel, meaning his bowel had perforated and he was being transferred to Leicester Royal Infirmary for lifesaving surgery. It was made clear that Ethan’s chances of survival, even just the hour journey to the hospital were slim, and due to equipment, we couldn’t travel with him. We were devastated…
The journey to Leicester felt like forever. Was our little baby still alive? We waited anxiously for Ethan’s arrival. At 4:30am he finally arrived and was still with us. By 12pm he was in theatre where they manged to find the perforation and had to wash him from the stools that had leaked. They removed 5cm of his large intestine and put in place an Ileostomy and colon fistula. He was in recovery from theatre by 2pm where he was started on a specific antibiotic to treat his sepsis.
On the 19th they performed a lumber puncture which confirmed the diagnosis for bacterial meningitis. A domino effect of the sepsis. They performed an ultrasound on his ventricles in the brain which appeared to be dilated so they needed to be monitored closely. Over the next few days Ethan got stronger and was off the life-support completely by the 23rd December. Christmas Eve came and we were finally able to hold our baby for the first time since he was 9hours old. On Christmas Day, we were given the opportunity to feed Ethan for the first time through his NG Tube. At 00:01am on New Year’s Day he was transferred back to Kettering SCBU to finish his antibiotics.
On the 5th January, Ethan had another ultrasound performed which shown his ventricles had dilated further and he was diagnosed with Hydrocephalus. We were so heartbroken. Ethan was finally discharged home on the 7th, a very overwhelming moment we will hold on to. Upon our arrival home, Ethan was reunited with his big sister Lydia and we finally had our family all together and just snuggled on the sofa. A breath-taking moment.
On the 8th January, we had a meeting to discuss a plan for Ethan. He was still very small so he needed weighing weekly and due to the hydrocephalus, he needed weekly head circumference doing too. He was assigned a stoma nurse, paediatric consultant, referred to the community nurses and physio, given permanent open access to the paediatric ward and a MRI was requested. As Ethan hadn’t been feeding well, he was checked over while there when they noticed his spleen was very prominent so they took bloods, a urine sample and referred him for an ultrasound before we could go back home.
Ethan’s weekly visits started from his health visitor and stoma nurse and he also started physiotherapy on the 18th. It became apparent that Ethan was still struggling with thick secretions and weight gain was very poor. Despite feeding well, Ethan dropped down two centiles on the weight chart. He was taken into hospital too and diagnosed with reflux so he started taking Gaviscon.
On the 23rd Ethan was taken into hospital again where he started IV antibiotics for a wound infection from his previous operation, while there he had his MRI scan. This revealed that the meningitis caused a blockage by his third ventricle, which caused his hydrocephalus. He was discharged later that day.
On the 27th January Ethan started to have daily haematemesis (blood vomiting). He was sent for a liver function test which came back showing his ALT levels were high. We also got the results for the genetic tests they did in Leicester, they were all normal, so there is still no known caused for his bowel perforation, so more test are required and also investigations into his poor weight gain and secretions, particularly a sweat test for cystic fibrosis.
Over the following weeks of January and February, Ethan was in and out of hospital for various tests and issues, more so with his weight becoming a dangerous factor. Ethan had dropped off the centile chart completely despite starting Nutramigen milk. We watched our baby deteriorate in front of our eyes, day by day, unable to get any answers as to why. Our 11week old baby was still in tiny baby size clothes due to failure to thrive, very pale, struggling with secretions, daily haematemesis and now blood in his stools. Ethan also shown signs of respiratory issues resulting in a lot of retraction and recession.
On the 5th March Ethan stopped breathing after two larger vomits of blood. Our fragile weak baby went blue and my heart just stopped. Once stabilised by the paramedics, Ethan was rushed into hospital by ambulance. How much more can his suffering body go through? A question to which the answer was weeks…
Once home from the horrific ordeal, completely heartbroken, we knew we needed to take him somewhere that could give Ethan the fighting chance he deserves, so we went to Addenbrooke’s hospital in Cambridge where he was admitted in on the 9th March. Ethan was seen by the paediatric gastro specialist team and dietitian, stoma nurse, and a respiratory specialist. He was diagnosed with a cleft/bifid Xiphisternum and diaphragmatic flutter. His weight was dangerously low and we worked tirelessly with them to ensure Ethan gain the crucial weight he needed to survive. If it wasn’t for them, we would have lost him within days. They changed Ethan’s milk to Puramino, which we must make up a certain way to compact it so it’s high calorie. He arrived in Addenbrooke’s weighing 7lb 9oz and came home weighing an astonishing 9lb 3oz.
Once home we were set up on the CONI+ Scheme and given an apnea alarm due to his ongoing respiratory issues. His weekly head circumference started showing signs of excessive growth, an indication that the hydrocephalus is developing so another MRI scan was requested for 6-8 weeks time.
On the 24th March Ethan’s feeds lowered and he became unwell due to his low immune system, his temperature was 39.2 degrees and he had a minor cold. On the 29th Ethan was sent up to the Paediatric Assessment Unit (PAU) due to a temperature of 40.3 degrees, where an x-ray was done. The results shown that 1/3 of his right lung had collapsed. Our baby, already been through and still going through so much now had this too, caused by a very minor common cold. They started Ethan on IV antibiotics as a preventative so it doesn’t develop bacteria and they started a trial of suction for his secretions in his nose and throat. This was done regularly and before very feed. It made a lot of difference to his feeding and he was able to finish his feeds without taking an hour each time. He was prescribed Domperidone to speed up his metabolism, multivitamins and iron due to his low weight. Ethan had lost 5oz and now weighed 9lb 9oz at 15 weeks old.
While in hospital Ethan’s head circumference was still increasing and I pushed for an ultrasound instead of waiting for the MRI in 6weeks time. His measurements had gone from the 9th centile to the 91st centile, meaning his head is measuring 91% bigger than that of a baby his age. This jump in size happened in a short 5 weeks. During the ultrasound, there was too much fluid causing the ventricles to become so large an accurate measurement couldn’t be taken so Ethan was sedated for a CT Scan. The CT Scan shown that the hydrocephalus had increased quiet considerably, so the ventricles make up about 2/3 and has compressed his brain against the skull. The scans results were sent to Oxford- John Radcliffe, where we had a pre-operative assessment on the 6th April. We sat down and listened to the paediatric neurosurgeon explain how our little boy needed to undergo brain surgery… he’s only just about to turn 16 weeks old.
It was discussed that he will have a procedure called an Endoscopic Third Ventriculostomy (ETV) as he’s too high risk to have a shunt put in due to post-op obstruction. This operation is a huge gamble but one unfortunately we have no say over. Without this operation, Ethan won’t survive due to the pressure on his brain. He’s already losing the ability to feed from his bottle and his reflexes are that of a newborn. He has no head control due to the weight ofEtha the fluid. Our inspirational and brave baby boy will undergo this ETV Surgery on the 12th April. How do we as parents prepare for such a traumatic, petrifying procedure? Ethan deserves so much more than the heart-breaking cards he has been dealt in his short life. As long as he keeps fighting, so we will to get him the help and answers we are so desperate for….
On the 12th April Ethan had his nurosurgery, a procedure called 'Endoscopic Third Ventriculostomy' (ETV). Ethan was taken to theatre at 11:07am and was in recovery by 2:30. We were approached by the surgeon that performed Ethan's ETV, he told us that the surgery went as expected with no complications. Such a massive relief. The surgery has a 50% chance of long term success due to many factors like his age. Being so young can cause the ventricle perforation they made, needed to drain the CSF, to heal itself and close up. He's also high risk for infection of the surgical wound or ventricle. Ethan is currently in the High Dependency Unit (HDU) for close observation. He in himself is very emotional and tired but we still got to enjoy a much needed cuddle, he even manged a little smile. Ethan is such an amazing little boy and we couldn't be more proud to be his parents..
Ethan was discharged home after his surgery (ETV) on Saturday 15th April. Upon discharge, Ethan's fontanelle had sunken in quite drastically, as expected due to the pressure in his head going down. This was a good sign that the ETV was going as hoped. Unfortunately when we woke up the next morning (16th), Ethan's fontanelle was full, which is a strong indication that the fluid had gone up again. He was readmitted into Oxford on the Monday. He was kept in for 3 days for close observation as it's now up for discussion whether or not he's going to need further neurosurgery to have a shunt put in place. Ethan had a review on Tuesday 25th April. The neurosurgeon said that Ethan's Fontanelle is full but not tense. He's still 50/50 if shunt surgery is going to be necessary. In order to make a decision Ethan will have another review on Tuesday 2nd May, if they make a decision on this day and a shunt is needed then he will be kept in and have the surgery on the 3rd May. Otherwise our amazing little boy is incredibly happy and has had an amazing weight gain. Ethan now weighs 11lb10oz and is now fitting into newborn size clothes! He's now measuring on the bottom line on the centile chart, which is such fantastic news. Ethan is now 19 weeks old and has had some extremely difficult challenges to deal with and unfortunately it's not over for him. We're still waiting on the test's for his breathing problems, stoma-reversal surgery and more test's for his other issues but they can't be carried out until Ethan is recovered from his latest surgery. We just hope for the best and live day by day, if Ethan can keep that beautiful smile on his face then we can too....
*** Shunt Surgery***
Ethan had his second review today at Oxford. Over the last few days we noticed some changes in Ethan. His feeding had slowed down and his head seemed bigger. He had a CT Scan which shown that his ventricles had gone up to the same degree that they were before his last neurosurgery. Although the ETV had bypassed the blockage in between his lower ventricles, his head isn't reabsorbing the fluid so it's just building up again. The only option left for him is to undergo further brain surgery to have a Shunt put in. This will be permanent. The Shunt will drain the fluid from the center of his ventricles into his stomach. This is a major neurosurgery and carries similar risks as the ETV. Main risks being infection (meningitis), Shunt malfunction, Hematoma, and risk to life. Ethan is having this surgery mid morning (3rd May). We are completely devastated that our little boy has to go through this. No child or parent should have to. We are just heartbroken.... Keep fighting Ethan! We love you more than you could ever imagine xxxxx