Liam’s Story

Story submitted by Liam’s mother, Yvett:)

Liam at birth

So where to start….

We did not know about Liam’s Hydrocephalus until week 32 because nothing was showing on ultrasound until that point.When it was discovered, we had to see some more doctors and plan how to go from there. It took just 2 weeks, from that day, until our son was born via c- section.

He was born on March 26, 2015 at 8: 48 AM. He weighed 2490 kg  and was 49 cm tall. His head was very large when he was born. Doctors measured his head to be 42 cm around, which is very large and made him weak.

Since he was 5 weeks premature, his lungs were not working as well as they should so he needed some extra help breathing. He got a shunt placed in when he was just a few hours old which worked well from the start. But since he got a small infection when he was 3 days old and this lungs were not totally developed- he needed to be placed in a respirator with extra oxygen and nitrogen to help boost his lungs. This help was only needed for a few days but he would be needing extra oxygen for 1-2 month after that since he was premature.

Liam was born at Lunds hospital in Skåne, Sweden.  We stayed there for 1.5 weeks until they finally moved us to a hospital just 20 minutes from home. At that time, he was disconnected from everything except his oxygen which he would need a few weeks more.When we had been moved to Helsingborg, we had our own room, and since someone infected him with a harmless bacteria we had to be on lockdown which was a pain since we were not allowed to exit our room. The bacteria was harmless to other children and adults but for a 700 gram baby it could be worse. And since we were still placed in neonatal care just as we were in Lund, but not in ICU. We stayed in Helsingborg for almost 1.5 weeks  and were allowed to go home since he was doing well. Although, he was still on oxygen. But here in Sweden, I could get homecare and even oxygen. So when we got home, we had 14 small tanks of oxygen waiting for us.

At that  point i had never felt more relaxed. To finally be home with my first child felt amazing.  Liam was doing well except for a small wound on his neck where they had to open when placing his shunt. We got some antibiotics for it,but after being home for just 7 days, I noticed that it was still not healed.I convinced myself I was seeing his tube through the wound. Unfortunate  for us all, I was correct. The next day,we were (yet again!) placed in hospital care. Since they did not want to take any chances, they removed Liam’s perfectly working shunt.  We were hospitalized for 7 more days before he got a new shunt placed- this time on the other side of his head. During that 1.5 weeks, his head grew 1 -2 cm more since there was no shunt to help with circulation. The same night they replaced the shunt they had some issues getting Liam to wake up. His blood work was not good. He ended up having a blood transfusion which helped and he also got his feeding tube back for 2 days just so he could get some help.

When we finally got to go home for the 2nd time, we were relieved. Liam was doing well and have been doing so since that day. We have change shunt settings 1 or 2 times after that and now his head is barely growing. Sure, his head is almost as big a a 2 year old’s and much pointier but i think it suits him. He is Mr. Charming and everyone who meets him can’t help but love him!

The past year we have noticed that he has had some major delay in his motor functions. It took him until he was,at least, 6-7 month old before he could hold his head by himself. And it was not until just recently that he learned how to sit alone stably on the floor. I believe he was about 14 month old when he finally learned. Sure he could sit before then but he just didn’t want to. HE wanted to stand up aLl the time- using a table to lean against, etc.

I have heard that many children with Hydro. have had issues with motor function and we also did a CT scan, not long ago,  that showed that he had some delays in the front part of his brain were motor skills are located and also vision. We have also noticed him not seeing as well as a child i his age should, but that is something we are training with eye patch and are also having regular visits to the hospital to check that out. At the moment,we are  waiting for an appointment to do a MRI so we get a clear understanding on how his brain looks and if there is anything wrong.

Liam was also born with  a cardiac murmur on his heart. Nothing serious but also something we are having checked once a year.

Liam’s progress has been going slowly the past month. His eyesight has improved a lot and so has his balance especially sitting. But his balance standing is something totally different. Four months ago he got a different walking-chair from rehab which has helped a lot, and now he can run with it and open everything indoors. But he walks with both feet at the same time and without it he doesn’t  want to take 1 step at a time so we have to show him  the right way of walking and train his balance.  In 3 weeks, we will be swimming with him- 1 day a week for almost 3 month which is awesome because now we can start building his muscles. Sure he is a very strong little boy, but since he is 82 cm tall and weigh about 10kg he doesn’t seem to get a chance to learn to keep his balance since he is growing so fast (he grew 2 cm in 1.5 months).

Liam have had a very traumatic beginning in his life and since he was very ill in the beginning we can’t say he got a chance to be a baby until he was at least 5 month old. From our perspective it feels like he is almost 8-10 month behind in his motor skills. But in some parts of development he is just like anyone else. He wants to be able to sit up by himself and run.



Rohan’s Story

Editor’s Note: I’m introducing the first Hydro warrior story on this blog. I will now be highlighting other Hydrocephalus patients’ stories. My hope is that we learn and feel comforted by one another in our times of need.

Rohan’s story was submitted by his mother, Heather.

My son’s story all started at my 12 week scan when i was pregnant. There were  some visible signs of Down Syndrome, due to the space in the neck area, so i was referred to my hospital for another more in depth scan and a Amnio to find out if baby had Down Syndrome. Doctors  took the sample and sent it off but we had to wait a few weeks to get the results and at 14 weeks i had another scan.  During this scan we could clearly see a balloon- like shape bouncing around the back of baby’s head, it was like he had grown a new head! The results from the Amnio had come in and cleared HIM of any chromosome errors. So that was a relief, but what exactly was this balloon growth? They were not entirely sure and had to do further tests, but we were told we should start discussing a medical induced termination. Over the next few weeks, I saw a few specialists, had MRIs, 2D and 3D scans, and x rays- all while  going between 2 different hospitals!l Finally, we were told our son had an Encephalocele and the likelihood of his survival were at about 5%. If he did survive, he would most definitely not ever be capable of walking, talking, feeding himself, going to the toilet on his own,and  he would be wheelchair bound and ( pretty much) completely brain dead. Doctors said  terminating the pregnancy would be the most humane thing to do for us and our unborn child.

On our next appointment, to sign the paperwork to induce early labor at 22 weeks, the Dr. explained what would happen. During this whole meeting, our son- inside of my growing belly- was wiggling around and kicking. I sat there blurring out everything around me and started poking at my belly.  With every poke, I I got a kick back from my baby.  Then, it dawned on me….if he is paralyzed how come i can feel him move? He moves all day long. The doctor said it was due to the baby’s reflexes. I didn’t believe it, not for a second! After having the doctor look at my baby respond to my poking my belly, the doctor said that if I was having second thoughts he could organize meetings with more specialists. So, I ripped the form up and said, “Yes,  that’s exactly what i want to do!”

The next few weeks consisted of weekly hospital visits: seeing  different specialists, having more and more scans/ MRIs ( some weeks I was having 4 scans and 1 MRI in  a week). Every doctor kept giving the same grim outcome.Until the last doctor, Neurosurgeon, Dr. Robert Campbell. He told me that my baby would be just fine. Dr. Campbell said  he would  definitely have issues with gross motor, and we would be lucky if he would ever walk  independently, and he would likely have global delays and would require a lot of work his entire life, but he believed he would  be just fine. We would need to redefine what ‘normal’ looked like for him. Dr. Campbell explained how he will remove the balloon looking thing, and explained that he may have to place a shunt (more information would be given later if he needed to insert one).  My pregnancy continued, but we agreed that I’d go only to 36 weeks because I’m a Type 1 Diabetic and had lost a child previously at 37 weeks.

By 30 weeks i was looking like a Cabbage Patch: my head was pounding and I felt like death!  I was sent to the hospital where I would have my son (which is a 2 hr drive away). Turns out my symptoms were all related to Preeclampsia. I stayed in hospital until my BP was no longer be stable and they booked  my C-section.  On the morning of Feb 26, 2008, 4 hours before my c section,  I went into labor.  I was rushed by medical personnel to the operating room to deliver my son. Rohan arrived at 36 weeks weighing 8 pounds 13 ounces. He was placed on oxygen after birth as the did ultrasounds and MRIs of the sac on his neck. Later he was diagnosed with an Occipital Meningocele, which is a form of Spina Bifida.  Medical personnel  revealed that parts of his brain were deformed, but (yes) he would live a fairly normal life with different therapies monitored by his specialists.

When he was 6 days old, Dr. Campbell removed his “cele” and he bounced back beautifully, except he started to develop fluid on his brain. Which resulted in his having a VP shunt placed 14 days old. This was hard on his body and, his little heart stopped beating 3 times (!) but he came back and kept fighting. When he was 4 weeks old, we finally got to take him home! As days and months followed he got older, and grew, he was delayed with his gross motor: only just learned to sit up on his 1st birthday. At 2 ½ years old, he took his very first steps unassisted, and he walked with a walker for about 6 months. Than no longer needed the help! His balance was poor, resembling a drunk swaying about and tripping up, but- by God!- my son was walking on his own!

My son started in a mainstream school in 2012.  Half way through the year, just after losing his best mate to terminal cancer, we got news that his shunt was no longer working, which lead to him having surgery again.This time he had a small infection in the tube and a large amount of pressure on his brain, which caused him to lose sensation on the left side of his face, and weakness in his legs. There was a fair bit of damage done but, likely, with hard physio he would be able to regain his mobility back and feeling back.

Today my son Rohan  is 8 1/2 in grade 3. He loves Star Wars and Pokemon. He loves cars, footy, and soccer. He loves to learn about the world around him and about different countries. He wants to be a builder like his daddy:) He is a kind gentle little boy but can also be a loud naughty brat! But he is my best friend and the reason for living. I’m so proud to be his mum and so proud I went with my gut instinct and refused to sign those papers!