The Journal Entry of Charlie Whitaker

My name is Charlie Whitaker, and I was diagnosed with a rare disorder when I was just a newborn baby. This disorder prevents my body from producing red blood cells, because of this, I face many restrictions in the way I live. Everyday, I have to take medications and also undergo frequent blood transfusions to sustain my life. Unlike other boys my age, I cannot enjoy sports like they do, or I will start to feel faint and shortness of breath. I even have a personal nurse by my side so I can be under close medical care at all times.
Despite this illness of mine, I try to stay optimistic to make things easier for myself and my family, but sometimes, I feel like a hindrance, a burden that was stopping my parents from leading a happier life. I would really wonder why I am the one who suffers from this, and that life is so unfair. But I had to be so strong; everyone was watching me and I couldn't show how scared I was. Besides, my parents were struggling too; they have not had it any easier than me. I didn't want to keep bringing up what hurt me, it hurt them too. I wonder if they knew how I felt, but didn't know what to do.
It was until recently that my parents discussed with me a solution to this problem. They have decided to use in vitro fertilization to conceive another child, but include another step. Using new screening techniques, they would screen the embryos and only fertilize the egg which would be most able to donate blood-making cells to me. In other words, this new sibling of mine would be born to save me. I was happy beyond words; it meant that I was going to have a chance of living a normal life.
However, my hopes were shattered when news came that the Human Fertilization and Embryology Authority rejected our request as they felt that it was not right to create a human life with the intent to save another life. Their reasoning is that it will not be fair to this younger sibling of mine, since he will have a life bound to me, a life where he is obliged to undergo surgeries and transfusions. Yes, if this baby were to be born, he would have to undergo transfusions to save me. But it is for this very reason that he would be treasured even more. He would be my saving grace. I believe that my parents would treat both of us equally and all of us will shower him with much love and care, and he would be able to live just like any other normal child, not deprived of anything.
Of course, my parents can opt to let me live the way I live now, but there might be problems in the long run, like shortage of blood for transfusions in the blood bank. Also, in the case that the blood donated to me is unsuitable, and there may be tissue rejection which will pose as a health risk.
Using in vitro fertilization to conceive another child would be a permanent solution to my condition. My parents made this decision after consulting our family doctor, who also feels that it is the best choice. It would result in both my sibling and me being able to lead normal lives and also lessen the financial burden on my family. My parents would not need to be constantly worrying over me and spend more effort in caring for my sibling and me. It would be the best solution.
Other concerns are that this method is unethical and deprives the second child of his human rights. However, if my sibling is able to grow up in a loving family under the care of responsible parents, I do not feel it is much of a problem. Of course, if he has his own views about undergoing these transfusions, we will take in his opinion. I sincerely hope that the authorities will review this case with more compassion, and weigh the different factors before making a decision.
Posted by
Gillian @ |11:50 PM|
A peek into a Mother's mind

It is definitely not correct to take over the rights of another human being. The issue on whether it is right to create a life to save another life has been a very controversial topic since in vitro fertilization was introduced. Most people may say that no one has the right to take control over someone else’s life let alone bring him to this world for someone else’s sake. However, as a mother, I would want to give the best I can, and only the very best, to my child.
My child, Charlie, suffers from a rare disorder that prevents his body from producing red blood cells and he has to take daily medications and frequent transfusions and needs to be under close medical care if not he would die. Thus, my husband and I decided to use in vitro fertilization to conceive another child, but only fertilize the egg which would be most able to donate blood-making cells to Charlie. Of course, this is a painful decision but we have given it much thought before making the decision and we feel that this is the best way to save our suffering son. Although this decision to bear another child to save Charlie is the best solution by far, there will also be problems that will arise. For example, the child that we decide to conceive will inevitably feel upset or feel that we are biased towards Charlie. To solve this problem, we, as their parents, must be the first to explain and let them know what is actually happening. We will tell our child that although he was being brought to this world to donate blood-making cells to Charlie, he is still our child and we will treat him equally as how we would treat Charlie; and that we are not biased towards Charlie but actually wanting to save his fragile life. This way, he will then understand this issue and will not be doubtful about his existence. Of course, there are also other alternate solutions to save Charlie’s life.
We can continue to let Charlie take daily medications and frequent transfusions but there will be problems that we will face in the long run, for example, if there is blood shortage for transfusions in the blood bank or if the blood donated to Charlie is unsuitable and there may be tissue rejection. Another solution is to donate our blood to Charlie. However, although this is the simplest and fuss-free solution, our blood type does not match that of Charlie’s, and thus this solution cannot be used. Another solution is to use science to develop a technique to produce suitable and sufficient blood-making cells for Charlie. This way, Charlie will get suitable blood-making cells while we do not have to bear another child. However, this solution has its limitations as no such technique has been developed so far and Charlie needs these transfusions frequently. Thus, we feel that the best solution is to bear another child that possesses the most suitable and most able to donate blood-making cells to Charlie.
Firstly, the child will have suitable blood-making cells that can be donated to Charlie and since they are from the same parents, there will be a lesser chance of Charlie experiencing tissue rejection. And also, the child will not be harmed when he donates the blood-making cells to Charlie, which suggests that it is a win-win situation. In addition, this solution of bearing another child to save Charlie a better solution for Charlie as there is also a lower chance of Charlie’s body producing antibodies against these cells. Lastly, Charlie will be more secure and safe as there is constant supply of blood-making cells which is suitable for him. I recently read a book titled “My Sister’s Keeper” by Jodi Picoult about creating a life to save a life. The child being brought to this world to save another child was unhappy and wanted to claim the rights over her own body.
However, I feel that as long as if we explain to our child when he is old enough to be able to understand, he will not feel as indignant as he already knows what is happening and why we are acting this way. There will be four stakeholders in this situation, my husband, Charlie, the child and myself. However, just as long as we explain the situation to the two children, I believe that everything will go on smoothly as they would have enough trust in us and in themselves.
I have four ethical questions in mind: Should patients decide their own life? Should parents have the right over their children’s life? Ought we to legalize this procedure whereby a life is created to save another life? There are four values which should be identified in response to this procedure, namely, respect, responsibility, courage and compassion. Before making this decision, we must first respect everyone’s right and that no one is superior over others. We must also be responsible and have enough courage to make the right decision. And thus, after considering all these values, stakeholders and principals, I would like to propose to the Authority to grant my request of creating a life to save my son’s life.
Posted by
chloeteo @ |11:31 AM|
The life of the Minister of HFEA

I have been in the Human Fertilization and Embryology Authority for many years. With my experience and my position as the Minister of the HFEA, I trust the decisions that I made and I believe they were made for a reason. I do hope that the Whitaker family will accept my rejection to their request.
I really want the Whitaker family to understand that the duties of the HFEA are not as easy as it seems. They consist of the regulation and inspection of all the clinics in UK that provides in vitro fertilisation, artificial insemination or the storage of human ova, sperm or embryoes. It is the dealing of lives, and we are largely responsible for any life that we allowed to be created unnaturally.
There are many concerns we have regarding the Whitaker family’s request, which is to create a life to save the life of their son, Charlie.
Should we allow another child to be born to save the life of their current son, Charlie, then wouldn’t it be unfair to the child who has no say to how his life is being used by his brother?
Yes, besides the transfusions and injections, his life will still go on like a normal teenager. But won’t he feel like his life is being bounded to his brother?
When the child is born, he will have to suffer countless of pain. The pain will not be from his fall during soccer practices. Neither will it be the fight he had in class. In fact, it will be from the countless surgeries, transfusions and injections he has to undergo to help his brother, Charlie.
This is an issue of human rights.
The child is most likely to begin transfusions when he is still a baby and that is when he does not have the ability to decide if he wants to help his brother. From then, he will have to begin to get use to the frequent visits to the hospital in the future. Also, to create a life to save Charlie will involve the "selection" process, creating unlimited number of embryos until a "suitable" one is found and with the "unsuitable" ones presumably being destroyed.
Giving your life to save others is fine as long as you make the choice to do so. The second child in this case is having his entire fate forced upon it. I understand the mother’s agony to save her dearest son’s life, but I find their request unacceptable and unfair.
I reject their request to create a life to save a life. I believe that there are other solutions to the problem. But in any case, I propose they can still have a child by the means of in vitro fertilisation. However, the child borned can only begin to help his brother, Charlie, when he has the ability to make decisions.
Posted by
Tongwei @ |11:15 PM|
A Page From The Family Doctor's Journal
In all my years as a doctor, this is my first time seeing such a case as the Whitakers. Charlie Whitaker suffers from a rare disorder that prevents his body from producing red blood cells. To sustain Charlie’s life, daily medications, frequent blood transfusions and close medical care are needed. As the family doctor of the Whitaker family, it is indeed extremely painful to have to watch Charlie grow up battling this disease, and I know that his parents are also heartbroken that Charlie cannot enjoy life to the fullest unless he is cured of the disease. A way to solve this dilemma is to use in-vitro fertilization to have another child, but the embryo would first be screened to see if it was able to donate blood-making cells to save Charlie. However, The Human Fertilization and Embryology Authority rejected the Whitakers request as they felt that it was not right to create a human life with the intent to save another life.
Personally, I disagree with The Human Fertilization and Embryology Authority’s rejection of the request of the Whitaker family. Firstly, as a doctor, my main purpose is to save and cure lives. If Charlie can be cured of his disease with blood making cells donated from a sibling conceived with the cells to save him, wouldn’t that be a god send? By creating another life to save a life, it would result in two healthy lives and no deaths compared to a possibility of a death and thus no lives. Thus, I have no doubt that we would all choose the former as our choice.
With blood making cells from a sibling, Charlie would be spared a lifetime of blood transfusions, daily medical treatment and may even prevent an early death. If the rare disease could be cured, then why not go ahead and utilize the cure? No one would like to be saddled with a disease that gives them so much pain and suffering and prevents them from living life to the fullest. Yes, some people may feel that selectively choosing an embryo just for the sake of saving another's life is unacceptable, as the parents would not treasure the child. However, that kind of thinking may not exactly be the Whitakers motive. Instead, detractors should trying to stand in their shoes and try to understand the dilemma they are facing. I feel that instead of looking on the negative aspect of something, one should look on the positive side, because that is what life is all about, living life to the fullest with a positive outlook.
In the event that the Human Fertilization and Embryology Authority decided to accept the request of the Whitakers, I would give the Whitakers the go ahead with the in-vitro fertilization treatment but on the condition that the child conceived out of the IVF treatment should be showered with the same amount of love, care, devotion and security from his or her parents. Also, the child conceived should be constantly reminded that his or her existence is not only to save Charlie, but that he or she is extremely loved by the Whitakers. Counseling would also help the child to know that he or she is extremely important and invaluable.
With a new child born to save Charlie, I’m sure that the Whitakers would not only be able to live a meaningful and healthy life but would also be greatly overjoyed with a new child to shower their love and care on. You can see how much the Whitakers love Charlie, even going all the way out to find an embryo with the most blood-making cells to donate just to save Charlie. Therefore from the evidence of their actions, I’m sure that they’ll love and cherish their second child just as much as they love Charlie.
Instead of saying that the Whitakers only want for a child is to create a life to save another life, I feel that this would be more appropriate for their cause.
“A life created to save, and be loved”
Here’s wishing them all the best.
Posted by
Anonymous @ |2:06 AM|