For years I was an avid blood donor; I would donate as often as I could. Occasionally I would be declined as a donor because I was anemic or underweight (hah, those were the days!), and at other times I would be declined because I had been vacationing in a Malaria endemic area (Pakistan). But still, I donated frequently. Then the guidelines changed, and now I am no longer able to donate blood in the United States. Ever. Why am I not eligible? Because I resided in the UK for greater than 3 months between January 1, 1980, and December 31, 1996. Apparently I could put my blood recipients at risk for developing variant Creutzfeld-Jacob Disease (vCJD), a.k.a. Mad Cow Disease. Ugh! It’s disappointing; especially when you hear about the shortage of donors. I was not aware that I could have donated before Bilal had his surgery, because apparently eligibility criteria for family members are less rigorous. He received blood on two occasions after his open heart surgery.

Until recently I had never thought that I would choose to be an organ donor. But since I have become more involved with the Congenital Heart community I have seen so much good come from organ donation and transplant that I had to stop and think. Being Muslim there are certain things we believe in regarding the sanctity of the human body, even in death, which has often made me wonder if this is acceptable, or it would cause conflict with my faith. We believe that the Quran guides us, and we can find answers to all such dilemmas within. I am not even remotely a scholar of the Quran though I try and read it with translation when I can. The issue of human organ donation and transplantation is a modern one; obviously in the time of the Prophet Muhammad (PBUH) when the Quran was revealed to us such procedures were not being performed. In such instances consensus opinions are expressed by scholars of the Book to interpret the Word in a modern context. These opinions are called ‘Fatwas’.

So I started to do some research online, and came across several interesting sites that presented opinions in the light of teachings from the Quran. For example this site presents both pros and cons in the light of Quranic teachings. And you can find a Fatwa from an Islamic scholar here. The salient points of this latter one state:

Conditions associated with a living donor:

1. He/she must be a person who is in full possession of his/her faculties so that he/she is able to make a sound decision by himself/herself;

2. He/she must be an adult and, preferably, at least twenty-one years old;

3. It should be done on his/her own free will without any external pressure exerted on him/ her;

4. The organ he/she is donating must not be a vital organ on which his/her survival or sound health is dependent upon;

5. No transplantation of sexual organs is allowed.

Conditions associated with deceased donors:

1. It must be done after having ascertained the free consent of the donor prior to his /her death. It can be through a will to that effect, or signing the donor card, etc.

2. In a case where organ donation consent was not given prior to a donor’s death, the consent may be granted by the deceased’s closest relatives who are in a position to make such decisions on his/her behalf.

3. It must be an organ or tissue that is medically determined to be able to save the life or maintain the quality of life of another human being.

4. The organ must be removed only from the deceased person after the death has been ascertained through reliable medical procedures.

I also found several other similar references, that essentially permit organ donation and consider it not a violation of the human body, but an act to save another human’s life. And “whosoever saves the life of one person it would be as if he saved the life of all mankind” (Al-Ma’idah 5:32)”.

So I have set my mind at ease and made my decision. I choose to be an organ donor. Most importantly my family is aware of my decision. And next time I renew my driver’s license I will answer “yes” to the question, “do you wish to be an organ donor?” My decision is a very personal one, and I would not fault anyone for choosing to be or not to be a donor.

Do you want to share how you feel about organ donation?

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Here’s some trivia, in honor of both Congenital Heart Defects awareness week and the start of the 2010 Winter Olympics in Vancouver. Did you know that the US snowboarding phenomenon Shaun White also has a congenital heart defect, specifically Tetralogy of Fallot? It hasn’t stopped him from accomplishing some pretty impressive things, why should it hold our heart kiddos back either? According to his bio he had two heart surgeries before he turned 2. And look at him now! He is such an inspiration.

Also, I wanted to share this video that gives me inspiration every time I see it. It’s all about hope and what our heroes can accomplish despite the physical defects they were born with.

The more I read about heart children, and adults with congenital heart defects the more inspired I become. We are blessed with Bilal who has endured one major open heart procedure and is the picture of health at age three, although we know he will most likely need some form of cardiac procedure later on in life. But there are so many children and adults who have undergone so much more than Bilal has, and still live their lives to the best of their potential, and in many ways even surpass that. That is true heroism.

This is a link to our blog.

I am very proud and blessed to have three wonderful children, each with their own unique personalities and characters. I hold them dear to my heart; they mean the world to me. But I the day my youngest child was diagnosed with a congenital heart defect (CHD) life changed for me.

Although I was running a busy family practice, I knew of only one child in my practice that had a heart defect, and even that child did not eventually require surgery for his VSD. I had no friends, or family members who had children with CHD. This was something that happened to ‘other people’, not someone I would ever personally know. Boy, was I wrong! Now I am a heart parent, and I can rattle off a lot of statistics without even looking them up.

1. Congenital heart disease is the number one type of birth defect
2. Almost 1 in every 100 children is born with a congenital heart defect. That’s about 35-40,000 births per year.
3. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined
4. Congenital Heart Defects are the #1 cause of birth defect related deaths
5. At least 35 types of CHDs have been identified to date
6. Approximately 1,000,000 Americans are living with some form of congenital heart defect

Bilal has tetralogy of fallot. His diagnosis was missed prenatally. Sometimes these defects can be missed during routine ultrasounds. Since my pregnancy was not high risk I did not have a specialized ultrasound, or fetal echocardiogram. Everything progressed well, until about 36 weeks gestation, when we realized that he had intrauterine growth retardation. That means he was not gaining weight as he was supposed to. So I underwent weekly contraction stress tests for the next 2 weeks, which he passed with flying colors. I had an induction at 38.6 weeks, and he was born weighing only 5 and 1/2 pounds, but pink and screaming. The next day the neonatologist heard a heart murmur, and that murmur was still there the following morning. So a cardiology consult was requested. When Dr. Colvin walked in to my room and told me about Bilal’s diagnosis the first feeling was that it had to be a mistake. Not my baby! But the reality gradually sunk in, as our lives began to change. In the beginning there was a lot of guilt, what did I do wrong? What should I have done differently during my pregnancy? But eventually I was able to convince myself that I was not responsible for my child’s broken heart.

We saw the cardiologist every 2 weeks until Dr. C decided it was time to consult the surgeon for repair. By then he wasn’t quite 2 months old, weighed less than 9 pounds and we were talking surgery already??!! Not at 4-6 month of age as we had been previously told. So I met with Dr. Knott-Craig, and instantly knew that he would be the right one, the one to entrust to repair my baby’s heart. It was obvious that God had intended it; Dr. K-C, with his 20 year experience performing CHD repair had moved to Birmingham just a couple of months earlier. He came across as a very compassionate, soft spoken person and I took a liking to him immediately. So on September 18th, 2006, at 8 weeks of age Bilal had The Repair. My baby turned out to be a true fighter. His hospital course was miraculously short; we were home by Day 4. And we have been going strong ever since.

I admit there are many days that I don’t think about Bilal’s heart defect, in fact sometimes I don’t even glance at his sternotomy scar when I am bathing him. It has become a part of him that I am used to seeing. But there are other days when I see his scar just peeking out of his pyjama top and my own heart skips a beat. I still wish it wasn’t my child who was born with a broken heart; knowing that he is ‘repaired’, not ‘cured’, and his heart will never be ‘normal’. Also knowing that he will most likely face another surgery later on in life, to replace a severely leaky pulmonary valve.

The type of defect Bilal has has the potential to be very severe, especially if associated with other heart/lung abnormalities. We are blessed that he is on the milder side of the spectrum. But tell that to a mom who has to hand over her child to a surgeon, understanding that the child’s chest has to be opened, his heart artificially stopped, in order to create a new anatomy, ideally as close to ‘normal’ as possible. Any defect is far too severe. In a perfect world there would be no such thing as CHD; no child would have to undergo the pain and difficulty of heart surgery. But this is not a perfect world.

Feb 7th-14th is CHD awareness week. There are many people out there who do not understand the impact of congenital heart defects. Until three and a half years ago I was one of them. This week many local and national organizations will be involved in a campaign to educate the public about this issue. Let’s all join hands in raising awareness. Our kids wear their scars with pride and heroism. We should show the world that we are proud of them too.

http://khanfamilyoffive.blogspot.com