Georgia’s story
“Georgia’s story”, as told by her mother, Louise (2nd December 2009)
At birth in 2007,Georgia was stuck in the birth canal and deprived of oxygen to the brain, causing cerebral palsy and affecting her control of her movements. CordLife contacted the lead clinician and neurosurgeon, Dr. Keith Goh to carry out Singapore's first cord blood transplant to treat cerebral palsy for Georgia. After the transplant, Georgia has become more vocal and has a renewed enthusiasm for exercise.
When we felt it was the right time to start a family, we had already been living in Singapore for about a year. We knew that the Singapore medical system has a very good international reputation and it was the right place for us to be starting this adventure. Louise's (my) pregnancy was very easy, uncomplicated, and we had no reason to believe that our daughter, Georgia, would be in any way unhealthy at birth, or at any time in the future.
We had seen the brochures for CordLife and cord blood banking in general at our obstetrician’s office, so towards the end of the pregnancy, we did a bit of research into what cord blood banking was, and the potential that it had.
About one week before Georgia was due, we signed up to bank our baby's cord blood with CordLife – never in a million years thinking that we would ever need to use it. We signed up because we liked the potential that cord blood had to help cure diseases like leukaemia, and felt that during Georgia's lifetime, there could be such changes and developments in science, that it would be a fantastic safety net for her, if she should ever fall ill. We truly hoped that she would never need to use it, but it was a nice little insurance policy tucked away.
Georgia's birth journey started well, but during the next hours of that journey, things went very wrong. She was stuck in the birth canal with no oxygen for a prolonged period, so she was suffocating. The lack of oxygen caused her body to start to shut down. The area of the body at the greatest risk with lack of oxygen is the brain, so during the last minutes of the labour, Georgia suffered an acute and extensive hypoxic brain injury.
We had no idea what was going on – and this certainly was not a scenario we had envisaged before going into labour. She was resuscitated after birth, and it took a further seven days to stabilise her. We did a MRI scan then, which revealed the extent of the brain injury. We were then told of her diagnosis of Cerebral Palsy.
Michael and I knew very little about Cerebral Palsy, having never been close to anyone with it. Cerebral Palsy is in essence, a general term for a brain injury. Babies can suffer from Cerebral Palsy due to an event before birth (eg. mother in a car crash, baby suffering from an in-utero event such as a stroke or heart attack, mother suffering from lack of oxygen etc), lack of oxygen during the actual labour and baby's birth, or due to a injury after birth and in early childhood (eg. Near drowning, suffering a head injury from a fall etc). And sometimes, there does not seem to be a reason that the doctors can pinpoint why a child has Cerebral Palsy.
Cerebral Palsy is a disorder that affects control of movement and posture, and manifests itself in a number of ways, from high muscle spasticity making the child very stiff, low muscle tone making the child very floppy, involuntary movements of limbs and facial muscles, or lack of movement in limbs and the face. It can be a combination of all of these. Symptoms vary greatly in severity from poor muscle co-ordination to quadriplegia. Every child is very different.
Whatever the child's state, it is extremely devastating for both the child and his/her whole extended family.
Georgia cried almost all the time when she was younger. She had terrible reflux. Her body was constantly spasming. She had seizures - up to 50 a day. She wouldn't sleep. She was in a huge amount of pain, and was in general a very difficult baby. She was not able to travel in a car seat or a pram, which meant leaving the house become difficult. As new parents, this was all extremely physically and mentally distressing to watch your child in pain and not be able to do anything to help.
We started taking her to a paediatric physiotherapist from the age of 4 weeks, and found out more of what the diagnosis of Cerebral Palsy would mean for Georgia and us as a family. Some doctors told us not to hold out much hope that Georgia would ever be independent, ever be able to walk or talk, or do anything much.
Naturally, as parents, there is no way you are going to accept that for your child's future.
We have looked into countless therapy options. From the traditional route of physiotherapy, occupational therapy, visiting neurologists, ophthalmologists, speech therapists, gastroenterdogists and orthopaedic specialists, through to the more alternative paths of cranial sacral therapy, hyperbaric oxygen therapy, Glenn Doman therapy technique, myofacial tissue massage, hydrotherapy, and the list goes on and on.
We were, and still are, constantly doing what every parent does for their child, by looking for ways to help improve Georgia's ability and general quality of life. What we have done so far has significantly helped her, but we also had something that not many parents have; their own child's stem cells.
We knew we had Georgia's cord blood banked. It took us over 18 months and an enormous amount of research, mainly on the internet, to find information about the potential for using stem cells, the risks – if any, and especially using a child's own cord blood, to help Cerebral Palsy children. It seemed that the best place for us to go to explore the option of using Georgia's cord blood was in the United States, at Duke University in North Carolina. This University, and Dr Joanne Kurtzberg in particular, seemed to be the place where parents were taking their children, and all were reporting varying degrees of improvement in their children post infusion.
The infusion itself is a very simple procedure, a day in the hospital, the infusion only takes about 30 minutes. It seemed a long way to go for such a simple process.
We got in contact with CordLife to see if it was possible to transport Georgia's cord blood stem cells over to the United States. It was possible but complex and time sensitive. It seemed like our only alternative.
Then CordLife put us in contact with Dr Keith Goh, to discuss our plans further. Keith felt very strongly that the infusion should be able to be done here in Singapore. He championed our cause through the hospital system and the Ministry of Health, and finally on the 8th of September this year, Georgia received her own cord blood stem cells. No international journeys and new medical teams. All done 10 minutes from home and in one day.
Of course you as a parent are secretly hoping that this will magically cure your daughter, and she will get up and say to you, “Wow, that was a wild ride”. Of course this was not ever going to be the case, and we went into the procedure with our eyes open, knowing that this was just part of the therapy journey for Georgia. What it has the potential to do, however, is make her therapy journey significantly easier.
Since she had the stem cells, we have noticed changes in Georgia's temperament, concentration and engagement, use of vocalisation, her muscle strength and renewed energy for life and all her exercises. These changes have happened over the past 2 and a half months, so we are very intrigued as to what might happen over the next year or so. And it is not just us as parents with rose-coloured glasses who have noticed. Georgia's therapists and neurologists have also noted changes in her.
Georgia is a very happy, bright and engaging child, who loves music, games and jokes, and activities such as swimming. While her little friends are on play dates and starting ballet classes, Georgia is busily working very hard learning the basic human movements, and to do what comes naturally to most children.
We truly feel that we have used Georgia's stem cells at the right time and for all the right reasons. There was no downside for us trying it. They were not going to make Georgia ill, or make her condition any worse. We, like the many other parents around the world who are trying stem cell technology, are seeing results. And, we like all those other parents, will continue to consider stem cells as part of Georgia's future therapy program.
Any expenditure was well spent. We have been very blessed to be surrounded by many friends and family here and in Australia, who have given generously to help us with all of Georgia's therapy.
We would categorically encourage all parents to bank their child's cord blood. You just have no idea if, when or how they may be used in the future.
We would like to take this opportunity to publicly thank Dr Keith Goh, CordLife and all our friends and family for their support in Georgia's journey so far, and specifically to CordLife and Dr Goh, enabling a cord blood infusion here in Singapore.
We hope that in the months and years to come, we have some great news to report on Georgia's development.
Louise Conn, Mother of Georgia Conn
MIX OF LIFE
A mix stem cell transplant gives new lease of life to Indian boy and family

moinam pal with mom manisha pal
It was only after a long wait of 5 years that we were gifted with a baby boy (Moinam) on February 25, 2005. My (Manisha Pal) pregnancy was very easy, uncomplicated, and we had no reason to believe that our son; Moinam would be in any way unhealthy at any time in the future.
Moinam was barely one year old when we noticed that he was always looking pale and tired which prompted us to consult a pediatrician in Siliguri. The doctor put Moinam through a blood test and found that he had an abnormally low haemoglobin count of 8.6 compared to a normal count of 11.5 for children around his age. Before the doctor could conclude his diagnosis, he prescribed Moinam an iron-based tonic for a month, hoping that the poor child was just suffering from nothing more than a minor form of anaemia. A month later, our son once again underwent a blood test. This time, the result was very discouraging.The test showed a further drop in Moinam’shaemoglobinlevel. Our biggest fear came through when the electrophoresis test confirmed that my child was suffering from HbE-Beta Thalassamia.
We were told that E-Beta Thalassamia major is an inherited blood disorder in which the body produces an abnormal form of haemoglobin, the protein in red blood cells that carries oxygen. The disorder results in excessive destruction of red blood cells and causes severe anaemia that can occur within months after birth. If left untreated, severe anaemia can result in insufficient growth and development, as well as other common physical complications that can lead to a dramatically decreased life-expectancy. Most of the children inflicted with this disorder do not live beyond the age of 10.
It was hard for us to accept the diagnosis so we took a second opinion from a doctor in South India who also confirmed that Moinam had indeed been inflicted with beta thalassamia major. My husband and I were very distraught but we never gave up hope. We were relentlessly doing what every parent would have donefor their child by looking for ways to help improve Moinam’s health condition and general quality of life. During our frantic search, Moinam had to undergo regular blood transfusions and medication to help maintain his haemoglobin and red blood cell count at normal levels. Seeing what my child had to go through really pained our hearts.
Finally, we found a doctor at Apollo and AIIMS in Delhi who recommended stemcell transplantation for Moinam. With this recommendation in mind, we went back to Siliguri to look for a transplant specialistin Kolkata itself. After much searching, we were lucky to have found Dr. Ashish Mukherjee, Medical Director of NetajiSubhash Chandra Bose Cancer Research Institute.
Dr. Mukherjee assured us that there is a chance for my child to recover. Through his explanation, we found out that stem cells suitable for the treatment of E-beta thalassamia major can either be harvested from bone marrow of a donor or from cord blood which can only be collected at the time of a baby’s (the donor) delivery. Once harvested, the cells would be cryogenically preserved under an extremely cold temperature of -197 degree celcius in a liquid nitrogen tank until the day of transplant. However, in order to ensure that the stem cells can be used, the donor must be free from E-beta thalassamia major and the cells must be a 100 percent match for Moinam if taken from bone marrow or 66 percent match from cord blood. The good news wasthe chance of a successful transplant increases if we were to use stem cells from a sibling and it would be much easier to obtain matching stem cells from the same.
Upon hearing this piece of good news, my husband and I decided to try for a second child. Both Ashim and I are thalassemia carriers so there is only a 25 percent chance that my newborn would be free from E-beta thalassamia major. Despite this low percentage, we had to take the chance because the likelihood of a cure for Moinamis currently over 90 percent. We desperately want to give our child a new lease on life.

moinam pal with sister ahoma pal
With God’s grace, our attempt for a second child was successful. In an effort to ensure that my baby’s cord blood would be collected in time at birth, Dr. Mukherjee put us in touch with Dr. Prosanto Chowdhury, the Medical Director of CordLife. It was kind of Dr. Chowdhury to spend his valuable time explaining us the collection processand the procedure of enrollment. CordLife being the largest network of stemcell banks in Asia Pacific with its globaltrack record in stem cell banking and research, we had complete trust on their professionalism as well as quality and hygiene conditions of its laboratory.
Thankfully, although my newborn girl was tested to be a thalassamia carrier, she was free from E-beta thalassamia major and her stem cells were a perfect match for Moinam. Unfortunately, the cell count of the stem cells in her cord blood was insufficient to ensure a successful transplantation so Dr. Mukherjee suggested to obtain a small amount of bone marrow from my daughter to supplement the transplant.

transplant day
The much awaited day arrived when transplant was to take place. We were going through a feeling which cannot be put into words. On one hand my precious daughter was taken to the operating theatre for bone marrow extraction, and on the other hand, my son was waiting for the transplantation on the bed. The amount of stress and worry on us was just too much. Finally when the stem cell transplant was successfully concluded and the doctor told us that Moinam would be cured, I felt an immediate sense of relief. Moinam is now in his recovery phase and the results from his blood tests have been very heartening. Even though he is still warded in the hospital now, we can tell that he is becoming healthier by the day since the transplant.
Through this experience, we advise every would-be-parent to collect their baby’s cordblood at the time of delivery as stemcells could be used to save a life. It not only helps for the treatment of thalassamia but also other life threatening diseases like leukemia and potentially cardiac disease, diabetes, parkinson’s disease, spinal cord injury to name a few.now in his recovery phase and the results from his blood tests have been very heartening. Even though he is still warded in the hospital now, we can tell that he is becoming healthier by the day since the transplant.

moinam after transplant
Moinam’s Story, as told by his mother, Manisha Pal (6th May 2011)