Kai Westvig

Kai’s Story

Born October 13th, 2000

Because Marlene tried for several years to have a baby without any success, she was over the moon when she found out she was expecting her first child at the age of 35 years. Marlene and Erik share a strong faith, and for them nothing happens by chance. Their faith would be sorely tested over the next year.

On 13 October 2000 at 14h47 Baby Kai was born at Panorama Hospital in Bellville, Cape Town. He was delivered with a caesarian section and weighed a full 3.7 kg. He was put into an incubator for 6 hours as all other caesarian babies.
At 20h00 he was brought to his mother for his 1st feed. He showed no interest and was very quiet and breathing very shallow. The sisters immediately noticed something was wrong and put Baby Kai back in the incubator.

At 07h00 the next morning the Pediatrician, Dr Gerhard De Villiers, told the worried parents the bad news, that they suspect something is wrong with the babies’ heart and would like to do a scan.

The parents were later told that their newborn baby has a very rare disease called the Vein of Galon Malformation. The flow of blood from the baby’s heart to the brain takes a shortcut back to the heart and does not feed the brain. The heart then also goes into failure because it is working twice as hard. The doctor also gave the shocked parents the bad news that their child has a 50/50 % chance on survival and a 50/50 % chance on being mentally retarded. The previous babies diagnosed with this condition either died, is blind or extremely mentally retarded.

The parents were told that Baby Kai and his Mom will be flown with a leer jet to Pretoria where the operation/procedure will take place, as there are only two doctors in the country who can perform this procedure and that is Prof Pieter Fourie and Dr Ian Duncan at Unitas Hospital in Centurion, Pretoria.

On 15 October 2000 Baby Kai arrived at Unitas Hospital and was put into a crib in the Pediatric Intensive Care Unit. There he was fighting for his life with the help of a ventilator (breathing machine), heart measuring machines and a whole host of other

As the parents looked at there son’s little body arch with each breathe he took they were overcome with tears and could not imagine anything worse happening to them. ICU Unit Manager, Sister Libbie, told the parents that they have a very sick child and need to be strong for him as the procedure that he has to undergo is very dangerous. She encouraged the parents to visit, talk and touch their baby as much as possible. The only restrictions were clean, scrubbed hands and positive touching eg. Holding the babies head with your hand.

Prof Fourie told the parents that after he consulted with the French doctors (where there are more diagnosed cases) he couldn’t do the procedure immediately because it is a very dangerous procedure and Baby Kai is very unstable and must first get stronger. He told the parents that the procedure entails a catheter put in at the babies groin and then a liquid glue is pumped through the catheter into the babies brain to seal off some of the veins. The dangerous element is that the glue can flow away to any part of the brain where it can cause hemorrhage and instant death. It is a very delicate but dangerous operation.

By the 3rd day they started giving Baby Kai some of his mother’s milk by means of a nasal tube to try and make him stronger.

After numerous consultations with the French, the doctors felt that they needed to wait at least another 3 to 4 weeks before the procedure could take place. But, by the morning of 21 October, Baby Kai’s condition dramatically changed for the worst. An emergency procedure had to take place of +- 6 hours. The parents were told that his condition looked very bad and that he might not make it. Baby Kai went into theatre at 12h00 midday. The worried parents were waiting all day for a call telling them that their baby boy did not make it, but no one could believe that Baby Kai was still alive when he was brought back to ICU at 18h00. It was a miracle that he survived this delicate and dangerous operation but the parents were told that the next 48 hours will determine if he will make it.

2 Days Later

Baby Kai survived the procedure and his condition was stable. The doctors confirmed that he would need another procedure soon because they could only close off a few veins and there are still a lot more to close. After another 5 days Baby Kai showed no movement and the doctors told the stressed parents that they might have to switch off the machines, as Baby Kai might be brain dead. The doctor told the distressed parents that their baby could live for another +- 30 minutes after the machines were switched off. This news was shocking and the parents could not even imagine coming so far, going through so much and now they might have to go home without their baby and looking at his room knowing he will never see his hand painted cot or handmade toy box.

The doctors decided to take one more brain scan to make 100% sure that Baby Kai was brain dead. After another long stressful day the results of the scan showed no brain damage. Everyone was so relieved but now the doctors had to try and reverse some of their medication to try and get Baby Kai back to life again. The reverse was done at approximate 18h00 that same day. While the parents sat with Baby Kai at approximate 20h00 the same day, his heart broken mother prayed to see movement by pinching Baby Kai on his little toe, and to everyone’s surprised eyes, he moved his foot. No one could believe their eyes en said that God definitely has a plan with this little boy’s life.

The doctors then decided to do the next procedure on Friday, 3 November 2000.
Baby Kai survived the 2nd operation and after the first critical 48 hours Baby Kai got stronger and stronger. Two weeks later on 18 November Baby Kai was sent home with his parents.
One day later – Cape Town

Back in Cape Town, Baby Kai got very sick. He was admitted to Panorama Hospital where the shocked parents were told that they think he has septicemia, but Baby Kai will have to undergo various tests to prove it. This news was not good because at this stage the Medical Aid has reached its limit and the parents already have to pay
+- R 250 000 out of their own pockets. Baby Kai was then moved over to a Government Hospital (Tygerberg Hospital). In ICU they confirmed the suspicion that Baby Kai has septicemia and will have to stay in Hospital another +- 10 days.

On the 1st of December 2000 Baby Kai was on his way home. His condition was stable at this stage but the worried parents knew that they could not live in Cape Town any longer because there is no one who could treat Baby Kai’s condition.
Erik, Baby Kai’s daddy, was extremely lucky when a Company in Sandton, Johannesburg, contacted him out of the blue and offered him a job. This was a God sent and they moved to Pretoria on the 1st of January 2001.

February 2001

Baby Kai’s condition was slowly deteriorating. After another brain scan it was noticed that there are swelling in the ventricles that influences his sight. This can cause blurring vision but could be rectified with the next procedure.

May 2001

The follow up procedure took place on 10 March 2001. The doctors were only able to close two big veins as they were scared of damaging good brain. Unfortunately this procedure had no impact on Baby Kai’s condition and he will need a follow up procedure in the near future.

As there are more diagnosed cases of this condition in France, it was recommended at a recent meeting with the doctors that Baby Kai should consult the Specialists in France to determine if the next procedure should be done in France or South Africa. This of course will have a major impact on the families budget should the procedure have to be done in France.

11 July 2001

Baby Kai had a brain scan which determined that one of the big veins in his brain are now blocked, forcing blood to take alternative routes. This causing vericose veins appearing on his face and bulging veins in his neck and chest from all die pressure. The doctors have no idée what procedure should follow next. They are currently corresponding with the doctors in France and also a doctor in New York as to what route they should follow.

Aug 2001

Prof Pierre Lasone and Dr Karl Ter Brugge are the two Intervention Radiologists who wrote the book on Vein of Galen Malformation. Prof Lasone are from France and Dr Ter Brugge from Canada. Dr Ter Brugge was visiting South Africa in August and Prof Fourie and Dr Duncan asked him if he would consider doing a procedure on Kai. He confirmed and a procedure was done on 17 August 2001. According to the doctors one of the big veins was closed and Kai should do a lot better.

Kai’s started progressing a lot faster and started sitting by himself and eventually started pulling himself up at the coffee table and started walking holding on to the furniture. It was a amazing time and the parents were overjoyed.

Then in January 2002 Kai started to deteriorate. His head was swelling with a tempo but although he was still pulling himself up at the furniture to stand, he kept on falling over onto his head. This was a very fragile time for Kai as he was crying a lot because he could no longer sit for long times on his own then he tumbled over.

At this stage of Kai’s life it was not only his balance that was troubling but he was also terribly constipated from all the medication he had to take for his hart, blood pressure and also medicine to help him excrete fluids. His mother had to give him a fluid enema once a day. Kai had not appitite and was only taken in fluids.

In February the family went to visit their relatives in Cape Town. After the third day Kai started vomiting and could not keep any foods inside. He was admitted at the Constantia Berg hospital with dehydration. He started eating solids with his cousins and got blocked up inside from the food. He was on “go lightly” a medication to pump his stomache clean. When he got out of the hospital the family went back home and Kai was again admitted to hospital 1 day later as he was still vomiting and very dehydrated. After 1 week Kai was back home again.

In April the Westvig family had a call from Dr Duncan who together with Prof Fourie does all Kai’s procedures, and was told that they wanted to see them.

At the meeting with the 2 Intervention Radiologists, they were told that after discussion with the French doctors, the only way they could treat Kai’s condition any further was to do a much more dramatically step. The doctors told the devastated parents that they want to put platinum coils in Kai’s head to try and stop the blood flow. It was a terribly decision for the parents to make as Kai is their boy and he is alive, and during the procedure Kai can get bleeding in the brain or afterwards his brain can start swelling and he could also die. After prayers and careful consideration the Westvigs decided that they have to do what is best for Kai. Kai was admitted to Unitas hospital on 17 June and was taken into theatre at 9h30 that morning. At 17h30 that afternoon Kai was wheeled out of theatre and he was still alive. The first 48 hours was terrifying and Kai was carefully monitored. By the 3rd day Kai was responding so well that he was sent home that same evening. It was another miracle that took place and Kai was ALIVE.

This is now 8 weeks later and Kai started talking (although he is only saying a few words) his will to walk is there but his body is still so small in contrast with his head that he is still a bit off balance and falls a lot. But, Kai is a lot better and the doctors took Kai off all his medication. A MRI scan will be done in 1 months time and this scan will determine if Kai will need more procedures in the future.

20 September 2002

Kai had his MRI scan on 10 September 2002 and another miracle took place – Kai Westvig was cured!!!! The doctors were stunned, Kai’s brain had no sign of any abnormality and was functioning like any other normal brain. The doctors said that this episode will be written up in their medical books for future reference.

Kai is doing fantastic. He talks more and more every day and to everyone’s big surprise he started walking, and is the joy of his parents life. He is still behind in his development but only time will tell.

God deffinately have a SPECIAL PLAN with this little boys life!

With God’s grace and intervention the family will be able to deal with Baby Kai’s multi-faceted problems that may occur in the future. They do want to believe that Kai will grow up to become a healthy and happy child with a purpose and testifying of God’s goodness in his life. God’s favour has so far been upon their lives and they continue to believe that “Everything works together for the good to those that love Him and are called according to His purpose”

Update 2007

Kai has been diagnosed of being on the border line of a child with ADHD. Some of his actions are very much like a child with ADHD but the medical profession does not know what medication to give him as he is not ADHD. It looks to me that South Africa are very limited to medication in this field. I need help to what we can give him to be calm and not so hyper active and aggressive.

Since 2004 we tried to put Kai in a normal playschool. Unfortunately the school was to big (25 – 30 kids per class) and Kai went from bad to worse. We then put him on the SNAP program (Special Needs Adapted Program). This program has originally been invented for autistic children but the doctors felt Kai could benefit from this program. We had Kai home tutored for 2 years and we could see a change in him. Then last year in 2006 we put him in a small farm school with only 13 kids in a class. In the first term there was a radical change in him. He started communicating with the other children and started counting, knowing colours etc. Kai then turned 6 years old in October and the school suggested that we find another school for him as he got to old for this school. The oldest kids were 4 turning 5 in 2006.

I then started searching high and low for a special school for Kai and then to our biggest surprise a Special Needs School opened a few kilometers from our house. The only problem was that Kai was a year behind in school and was only to go to a pre school before big school (hope you know what I mean??). This new school started at grade 1 (age 6 years). Although Kai is 6 years old he is about 1 year behind his peers. The principal felt we should give Kai a chance as there are only 3 kids in a class with 2 teachers. He also gets his Speech therapy and Occupational therapies at school. We then decided to send him in January 2007 to this school.

At first Kai cried every morning when I dropped him off at school. He told me “mom, I am only a children and cannot read and write”. These words woke me up with a fright that we are pushing this little boy and he is not ready yet. I then had a long talk with his principal and after long discussions the school decided to do pre school schooling with Kai on a one on one basis. In the first week we could see a dramatic change in Kai. He suddenly wanted to go to school and wanted to learn with the other children.

Then Kai got a terrible sinus infection and were very sick. Because his pain threshold is so high he did not say anything. He became more and more aggressive at school (to try and hide the pain) and then later also at home. Unfortunately this aggressiveness is still there and this is now 2 months later. He swears, fights, kicks and we cannot handle him anymore. I am extremely tired and hardly get any sleep. Kai goes to sleep at 20h00 but from 22h00 he wakes up and then come and sleep with us. He is very restless and kicks and turn all night long.

The neurologist has now put Kai on medication called Straterra. Kai has been on this medication for 9 weeks now. Kai showed tremendous improvement after the 6thweek. For two weeks we had a fantastic little boy. We are now back to square one and his behaviour is intolerable. I don’t know where to go anymore.

If anybody out there has the same problem with their child that was diagnosed with Vein of Galen at birth, can you please contact me as I am in need of urgent help!!!!!

***UPDATE 2017 ****

15 August 2017

My last post was in 2007 and I was desperate for help.
This is now 2017 and I can only say our journey over the last 10 years was a
roller coaster ride.
After farm schooling, home schooling, special needs schooling and eventually in a
school for Autistic children, we are a year and half away of Kai finishing school.
It is a frightening thought for me as Kai has only started to mature in the last
12 months and learning something new every day. He gets bored at home very
quickly and is currently a weekly border at he’s schools hostel/boarding house.

A look back to 2008
Kai was assessed at Vera school for Autistic learners towards the end of 2008
and all the special needs schools in the area were invited for the feedback
session to see where Kai will fit in. Needless to say, none of these school felt
Kai fitted their profile. Dr Yusuf Larken, head at the Western Cape Special
Needs association, then asked Vera school to keep Kai at the school until end of
2008. The head of Vera did not think Kai is suitable to fit into an Autistic
school but Kai seemed happy and this is now 9 years later and we are still at
Vera school and Kai will do his final year in 2018.
We struggled immensely over the last 9 years as one day Kai fitted in and the
next he did not. Kai’s medication was changed several times over the years as
the Drs were looking for any sign to confirm that the medication is working and
nothing fitted Kai’s profile. We eventually got Kai on medication called Abilify
in 2014, which is administered in the morning together with 3 tablets
Menograine and then in the evening Kai gets Abilify again and a tablet called
Seraquel to help him sleep.
Kai is very verbal and said that he hates Vera school because the autistic kids
are rude to him. I can only give my personal advice and that is that I think a
Autistic school is not the way, but a normal special school together with a
facilitator could work well. I feel we could have given Kai a bigger chance in the
big world out there if we preservered at his previous school, Vista Nova, that is
for intellectual disability learners, and employed a facilitator to help Kai. I am
sad that we never tried that and now we will never know.

Feedback on 2017
The only bad part this year was that Kai started becoming very aggressive and
it seemed Kai was very frustrated in himself. If I would ask him to do
something that he did not want to do then he would lash out on me and hurt me
badly. I was at one stage concerned for my safety. I spoke to various
professionals who said that this could be part of puberty as Kai is now 16 years
old and frustrated in his growing body. Unfortunately they all said that there is
nothing to give a male to help with all the hormones that is crashing through
their bodies. But I am happy to say that in the last month Kai showed a
tremendous change in behaviour and the aggressive side seemed to be more
controlled. I hope and pray that we will only go from strength to strength from
Kai has also been showing a vast improvement in class over the last 2 months and
started reading and writing and after always saying “I am an idiot, I cannot do
it”, he has become outspoken and there is a positive growth in his self-esteem.
We trust that this will also escalate and give us a well-balanced young man at
the end of 2018.

Where are we going after school in 2019
Well I have investigated a few possibilities for where Kai could fit in after
school in 2019, but so far have not come up with anything suitable.
The problem I have with Special Needs Facilitates where our kids can stay in, is
that our kids that were born with Vein of Galen malformation are so close to
normal that it makes the selection for after school very difficult. Although Kai
has only got as far as Grade 3 level in school he notices immediately when
someone is different (from being normal) and he then asks me if he must go to
such places because of his brain condition. I think with my heart, and my heart
bleeds for Kai as he so much wants to be like his sister and other normal kids
but he just struggles to fit in. I have recently started to investigate a home
where Kai could probably go as a day visitor or stay in. I have an interview at at
this home, called Horizon House, in the beautiful countryside of Stellenbosch in
a few weeks’ time.

More about Horizon House:
Horizon House is a residential and sheltered-employment centre in
Stellenbosch, RSA, specialising in the holistic care of people with a primary
intellectual disability. Established in 1974, the centre is located on a
smallholding on the slopes of Papegaaiberg Mountain on the outskirts of the
town. The centre can house and care for 102 people. They provide employment
to all the residents as well as to 35 day workers.
The residents need caring, growth, self-esteem, socialising and relationships.
Like all of us, they too, have dreams of things they would like to do. But they
are vulnerable and that is why they require a safe environment in which they can
come into their own.
Based on their intellectual abilities and interests, the residents join one of
nine work areas. This allows them to make a meaningful contribution through
sewing, recycling, repair work, cooking, gardening or something else in a
sheltered environment. At the same time, the work areas offer therapeutic
value and all the benefits of a proper job – servitude, recognition, pride, self-
esteem, companionship, quality of life and hope.
Holistic and client-centered service is provided by Horizon House’s staff
members, instructors, medical staff and a social worker. They also take care of
their recreational and spiritual needs as well as personal development. And they
support us, the parents and families.
Horizon House is a non-profit company responsible for its own funding. In order
to run a financially sustainable centre, we have to supplement their income
with donations, sales, fundraising, events and bequests.

I am hoping and praying that although this home is for people with primary
intellectual disability that this might be the place where Kai can fit in with
likeminded people.

I want to end off by saying to other Vein of Galen parents, at first it seems
that everything is dark and there is no way out but from personal experience of
the last 16 and a half years is that there is eventually a light in the tunnel. Our
kids are special and we just need to find the right place where they can fit in
and be happy.


Hope to hear from you soon.

Marlene Westvig


About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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One Response to Kai Westvig

  1. Jenny Nelson says:

    Hi Marlene,

    I thought i would contact you, as you are the only other family on the website from S.A, we are also based in Johannesburg. Our beautiful little girl was diagnosed at 36 weeks in utro, we to saw Dr Fourie and she had 2 embilozations, our biggest mistake was that we were based at Sunninghill hospital, and had no neurologist keeping an eye on the situation, or no AVM dr keeoing an eye on things, and instaed of picking up on little things that should have been a major indicator that she needed another embolization she lay in her hospital cot for nearly a month, while drs told us she was doing fine, and told us that the reason she couldnt get of the ventilator was that her trachea had collapsed due to extended ventilation, all the while her lungs were been dumped with to much blood, and so eventually when she face started & head started to swell they picked up her had hydrocephaluis, and then only called Dr Fourie to do another op, by the time we had more MRI’s done 1 day before the op, they called us in and said she had suffered severe barin damage as a result of ” melting barin syndrome” the neurologist told us if she did survive she would have severe cerebal paulsey and would never led a normal life. With this, we made the very difficult decision to take her off life support, and she past away in my arms at only 3 months of age. Iv been reading so many stories on the website and thought id tell you about our fight. How are things going your side?

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