Friday, May 20, 2005

A sad question answered

I blogged over at RealChoice about Manar Maged, an Egyptian baby who had "second head" removed. I pondered:
Was this a growth, or a second person living a parasitic existance? Should the ethics of killing the parasitic twin even enter into the equation?

Well, little Manar, her mother, and her team of doctors were on Oprah today. And the doctors confirmed what I suspected: This was not a "2-headed baby". Manar had a twin who for some reason had never developed enough of a body to survive on her own. The twin had no heart. She was even given a name: Islaam.
Manar and Islaam had two different brains but shared a common blood vessel that fed off of Manar's vital organs. Because Islaam was so dependent on Manar's body for survival, Manar suffered severe heart failure six times in the first few months of her life. Keeping Manar alive was a daily struggle.

"Islaam didn't have a heart to survive on," Dr. El Alfi explains. "She was surviving on the heart and lungs of Manar. She was getting nutrition from Manar. She was exchanging gases through Manar's lungs. And she was having blood supplied from Manar's heart."

So, despite the way the mainstream news covered this story, it wasn't a case of one baby having an unsightly and dangerous growth removed. It was a rare case in which both conjoined twins will die unless they are separated in surgery that will kill one of them.

What Oprah's web site fails to report are the words that moved me to tears of gratitude: One of the twins' doctors spoke of how little Islaam was a human being, afforded dignity to the end, given anesthesia just like her sister. The entire medical team spoke of the two children. Two human beings. Twins. Just one of them with birth defects that made survival impossible.

To her discredit, though, Oprah kept referring to Islaam as "the second head" and "the parasitic head." Earth to Oprah: she only lived nine months in the womb and ten months outside it, but she was still a child, not a "head." The surgical team sought a religious consultation before proceeding because they were fully aware of the moral implications of surgery that would end Islaam's life.

38 Comments:

At 1:15 AM, Anonymous L-M said...

I just saw this show (in Australia) and although I love Oprah and have never found her to be tactless so far, I was upset by her constant referral to Islaam as "the parasitic head".

The doctors were quite compassionate in their treatment of this triplet who was destined to die ever since her existence became known, but she was a person, just one with a terrible, fatal birth defect :-(

I think it was sad that her own family chose not to name her for those 10 months - she was only assigned a name before her burial.

 
At 8:11 AM, Blogger GrannyGrump said...

I think that the parents had to develop tunnel vision to cope at all. The stress must have been incredible. They knew from the get-go that the second baby had no chance, and that Manar could only live if the second child died. I think it's likely that they didn't name her so that they could cope. How could you cope with the ongoing knowledge that you're going to have to have one of your children put to death in order to save the other?

The doctors, on the other hand, were just enough detached from the situation that they could recognize Islaam's full humanity. She wasn't their child.

 
At 2:08 PM, Anonymous Lynne said...

Thanks for posting this information. I have been distraught about the referrals to the baby (Islaam) as "parasitic", and about the whole situation in general. I think about Islaam and wish she had the opportunity to live.

 
At 4:41 PM, Blogger mamabar said...

The saga of the Mager family is a story that touches the heart of mothers around the world I am sure. Their family, and especially Manar and Islaam have consumed they thoughts and prayers since I first learned of them. Because this reaches down and wrenches something in our heart, I wondered what significance this has in the big picture of LIFE. Why did this touch so many people, and why was it handled so pourly by media from the day the girls were born? There are so many different answers to that question. As many answers as there are mothers in the world. But my answer is that of three baby girls born on the same day, three world religions, and one very very very good God. I know it doesn't make sense. But Manar means "Lighthouse". Islaam means "To the Will of God". And Noora's name means "Light". I guess you could say I am fascinated with religion. And I really feel there was a purpose for these babies being born and named as their parents named them, including Islaam. And I was reminded of the story of Abram. There are two sons, Ishmael, and Isaac. Depending on if you are speaking to a Jew of a Muslim, well or a Christian too, you will come up with different stories of who the chosen son is. But these baby girls, when looking at the story from a spiritual perspective, you realize there are some parallels between them and our three primary monotheistic religions. I wonder why this is? And why would the two living girls be both named something of "light" and little Islaam named "To the Will of God". What does that mean. I know this is digging deep, and maybe a bit too over analytical. But maybe this story wrenches our hearts becaus there is more to life than death. Maybe these three religions that disagree on who Jesus Christ is, but seem to agree so much on the "Father" and the creation, maybe there is some truth. And maybe these little babies, maybe they are just a part of the truth. Maybe there is a Father of Lights. Maybe there is a will of God, and all three religions came from the same place just as all three baby girls were from one mother and birth. And maybe the three, Christianity, Judaism, and Islam are closer to each other than each want to believe. How deep does this analogy really go? And why though looked at as a parasite according to medicine and the media while she was alive, now after her death, she reaches into our hearts as mothers and we feel empathy for her and her family? Could this be because her story holds the very truth about the big picture, the circle of life? Maybe there is hope for Jew, Muslim and Christian. And maybe there is hope for Islaam in death. After being challenged by her story, I feel we live in a topsy turvy world, things may not be as we have been taught, or as they seem.

 
At 8:15 PM, Anonymous Anonymous said...

I have not even seen the programme yet due to be broadcast in the UK on Monday 20th February. I have been moved by the plight of the little girls, Manar and Islaam, since reading the little snippet in my tv guide. I am pleased that Manar survived her ordeal, yet at the same time I mourn the lost innocent Islaam. I am a mother too and although I will never fully understand what the parents' of the little girl's suffered, I am sorry to hear that they never named Islaam. I find it absurd that little Islaam was referred to as a "parasite" by the media etc, She was a baby, end of - a tiny human being, she deserved to be acknowledged. I hope that she felt loved. A little girl lost, I only hope that there truly is a God, and that Islaam is safe, warm and loved in his tender embrace. All my best to the two remaining triplets and their parents. Islaam you will forever be in my prayers darling. Zoe (24)

 
At 7:29 PM, Anonymous Anonymous said...

I love both twins (o.k,i like Islaam a tiny bit better..).
When I heard Manar had died,I really couldn't belive it.I still wish I could have known Manar.

 
At 6:28 PM, Anonymous Anonymous said...

Poor Islaam!I still can't belive that Operah kept reffering to Islaam as "the parasitic head'.
Shame on them!!Operah is now a terrible show,thanks to inocent Islaam.I sure won't be watching operah anytime soon!

 
At 11:26 PM, Blogger VA said...

I am glad others shared similar feelings as I did when I first saw footage on CNN two years ago about Manar and then unamed Islaam. I saw Islaam crying silently and wondered if she felt cold since she had no covering while Manar was dressed. When Manar was attended to, Islaam smiled at the attendant but she was ignored. It was heartbreaking and I wondered if Islaam's face was ever touched lovingly or if her hair was stroked with affection? Was she conforted when she cried? I hope she was shown love from someone during her short 10 months. I'll never forget her.

 
At 1:26 AM, Blogger GrannyGrump said...

Anon -- When did Manar die? I hadn't heard about that.

VA, I think the caregivers treated Islaam as a child in need of love. I'm not sure about the parents. Like I said before, I suspect that in order to cope at all they had to ignore Islaam entirely and focus on the child who had a chance of survival. Though it's sad that they did so.

 
At 4:43 PM, Anonymous Anonymous said...

POOR BABY!!!!!

 
At 4:50 PM, Anonymous Anonymous said...

Islaam was a complete soul.She never seemed to mind being a "parasitic head'.But she was human.She was a child.Just severly disabled.But I saw the documentry,and they refered to Baby Islaam as,'the parasitic head'
or'the second head'.HELLO!They were both babies.twins.but more importantly-were they trying to convince people on the documentry that Islaam was a toxic human waste,and Manar was a better,beutifuler baby?They even said MANAR looked prettier after her surgery!If The mother was a good mother,she would have been sad and said,'Islaam was a beutiful baby',like they said to manar!but they were refering on oprah that they were two babies.was it because they knew REAL people were watching,and if they heard that islaam was another head,they would get angry at the doctors?I don't get it.Anyway,DON'T WORRY ISLAAM!I STILL LOVE YOU!

 
At 3:46 PM, Anonymous lostindreams3 said...

I think they should have done something like blood transfusions for Islaam, artificial or transplant heart, etc. or remove part of Manars body rather than remove Islaam's head. I also don't understand why Manars stint wasn't constantly checked or removed rather than let it be something that wasn't discovered until too late.

 
At 11:40 PM, Blogger Cassie said...

As the mother of identical twins, this is very sad to me. I know this was posted a long time ago but I appreciate the extra insight. I saw an 8 minute thing about it on Discovery Health and it didn't sound like they considered Islaam a person (they didn't even refer to her by name). This case makes me want to go get my sweet babies and hold them.

 
At 8:22 AM, Anonymous Anonymous said...

i may be still young , but yet even i know that all human being, animal, and plant should be treated equally. People may say the most hurtfull things about others but no matter what a person is a person no matter what and they still had a life. Manars and Islam's life was very sad near the end but they all still had a life and both were seperate human being s who each had their own lives. Sure Islam may not have been fully devoloped but she had a life and she was breathing and alive just like any other human being. She may not have had all the abilities as us and so what if she had birth defects she was the life of a human being who was no different from us. Ive been around children like manar an islam all my life and have always treated them equally just like any one else. my sister has a birth defect also. she was born 3 months premature and was born with asthma , cerebral palsy, and other defects but she is still my sister and a person in that manner of fact. my point is how was manar and islam's life any different from ours?! I hope everyone will actually stop creating differences in between people because all i have to say is " those differences you people say are real are just words and not proven fact, just opinion of your own words"

 
At 10:28 PM, Anonymous Bibiana said...

I saw the documentary, and Islaam was definitely NOT just a parasite. She had emotions and feelings that showed on her little face. She was not just an extension of her sister. BOTH babies' deaths were tragedies. May God hold them both in Heaven.

 
At 8:37 PM, Anonymous Kaylan said...

I disagree with the article here and several of the comments. I've found most people who talk against the Church are not Catholic and don't know much about the teachings to begin with. I became Catholic when I was 15. I was going through a difficult time in my life and searching for answers. I asked God in prayer one night to show me the truth and the next thing I know, I was directed towards going to a Catholic Mass for the first time. Ever since I was awed and inspired and met a lot of really saintly people. I'm in my 40's now and have been through 5 pregnancy losses (4 miscarriages and one stillbirth). I have read up on all the pregnancy situations that a mom might encounter. When I had the stillbirth, I did not really know what the Church teaching was on the situation I was in. My cervix opened up, I had emergency surgery and then my water broke a few hours later. I was on a lot of medication in the hospital which made me hallicinate and feel really awful. One of the medications felt like lava in my veins. I believe it was to stop contractions. Nonetheless, the doctors wanted me to induce early even though the baby's lungs were not fully formed. The nursing staff, however, disagreed and told me to just remain in the hospital for several weeks so the baby's lungs could form. I was told with my water broken, that my organs could become infected. I was in so much pain, I went with the doctor's advice. The baby died only a minute before birth, at 23 weeks. It was horrible. I held her in my arms and cried, blaming myself for my horrible decision.

I honestly think that morally, it is wrong to kill one to save the other. I truly think mothers who gave their own life to save their baby instead, are saints in heaven. They are the heroes.

 
At 8:39 PM, Anonymous Kaylan said...

Oh, I wanted to share a site that covers these types of ethical questions, for those who are not familiar with Catholic faith:

http://www.ncbcenter.org/

Hope this helps some understand where Catholics are coming from. Just consider, too, that most charities in the world (hospitals, orphanages, even the welfare system to help the poor, came from Catholics). I find it really upsetting when people say mean things about something they really don't know much about. I'm referring to some of the comments here.

 
At 12:37 AM, Anonymous Anonymous said...

Deep point of view. I agree.

 
At 12:45 PM, Anonymous Anonymous said...

Islaam was NOT breathing, Manar had to breathe for her. Remove part of Manar's body? That's just sick!

And Islaam had NO internal organs to hook an artificial heart to, no blood vessels except for in her head. Islaam was an innocent victim of a horrible natural malfunction of development. From the get-go she was doomed and like it or not, she was killing her sister.

By the time of the surgery, Islaam was developing gangrene. Literally rotting "alive" and that waste was circulating back into Manar. In such a loser case, it was merciful to give Islaam a painless death. She was born with so much against her, why should she have been forced through the pain of gangrene?

I too, feel like Islaam was a soul. I too hope she was given recognition at least by the medical staff and am grateful she had Manar, if no one else. But there is no way around the reality that, through no fault of her own, she was slowly killing Manar and had to be stopped.

 
At 12:29 AM, Anonymous Anonymous said...

She had no heart, no lungs, no body. How could she live at all?
What kind of "life" do you wish she'd been able to live?

 
At 12:44 AM, Anonymous Anonymous said...

"Remove part of Manar's body?"

Islaam had no body at all. No heart, no lungs, no circulatory system, digestive system, no reproductive system. She couldn't eat, breathe, swallow, or drink. She had no limbs, no skeleton.
Her oxygen and all nutrients were supplied by her sister, who was slowly dying from the stress. There was no hope for Islaasm, none at all.

 
At 6:10 PM, Blogger Humberto Barcelos said...

Islam dont worry about the Oprah Winfrey opinion! Because she is a parasite not you! we all recognize you as a human being!Regardles of the suckers heartless who despised you, WE ALL LOVE YOU SO DEEPLY!Independently of religion, we all have to make sure that you are in another dimension in the arms of the lord had powerful love getting all the existence...Looking for us amd bless us with eternal cosmic innocence of the children! WE ALL LOVE YOU ISLAM! WE NEVER FORGET YOU!!!

 
At 12:41 PM, Anonymous Anonymous said...

Both girls are dead. Rather than getting outraged about how they were called, maybe spend this energy on children who are dying right now, even though in their case it's by no means inevitable. Otherwise it seems like just an excuse to feel self-righteous.

 
At 9:39 PM, Anonymous Anonymous said...

The medical term for a conjoined twin that does not have a complete body capable of independent existence is a parasitic twin. (Wikipedia: http://en.wikipedia.org/wiki/Parasitic_twin -- "Parasitic twins occur when a twin embryo begins developing in utero, but the pair does not fully separate, and one embryo maintains dominant development at the expense of the other. Unlike conjoined twins, one ceases development during gestation and is vestigial to a mostly fully formed, otherwise healthy individual twin. The undeveloped twin is defined as parasitic, rather than conjoined, because it is incompletely formed or wholly dependent on the body functions of the complete fetus. The independent twin is called the autosite."

This isn't any more immoral than using the medical term for a miscarriage and calling it a spontaneous abortion

 
At 10:43 AM, Anonymous Anonymous said...

1.What if Manar's sister had a heart and lung of her own???
2.What if Manar Grow up to 18 years of age and appear in all the competitive exams???
3.What if those two brains could function together and form the best human being on Earth???

 
At 3:32 PM, Blogger ali haider said...

Do not worry islaam you are little sweet human you have own brain and feeling we all love you. do not worry if your parents did not give you love billions of peoples love you and don not care about them these are just humans like you the real authority is Allah and she will give you peace person of every religion care about you. You and your sister enjoy in heaven.

 
At 11:11 AM, Blogger Lisa Barton said...

Thank you for this post. I stumbled across the phenomenon of "parasitic twins" when I was researching vanishing twin syndrome. I recently earned my MA in Theology and am working to increase ministry to those who lose babies, having lost my first in 2008 to a miscarriage at 12 weeks. Therefore, I seek to research all I can. I founded my efforts on the conviction that every life matters from the moment of conception (I am Catholic). For the first time since my miscarriage, my beliefs were really rattled as I learned about this sad phenomenon. But the fact that it is so horrifying to me tells me that there is something inherently wrong, and we are able to know right from wrong because God exists. Otherwise, why would be troubled by this or anything else that seems so "unfair?" We have an inner sense of what is right and what is wrong, and the way things "should be" that can only come from a perfect, supernatural being, because there is not much in this world that would suggest to us that things should be "different." Separated as we are from God, we know in our hearts that this not the way it was meant to be, and our hearts revolt in horror at yet another sight of evil. But this morning I read a psalm that answered my troubled prayers of the past night:

"For now the LORD has spoken
who formed me as his servant from the womb... and I am made glorious in the sight of the LORD,
and my God is now my strength!"

Little ones, you were made to be whole and you will be whole again! May you and your beautiful family be held in the comforting embrace of God, who also came to be unrecognizable on the Cross -- and yet he was human! Amen.

 
At 10:42 AM, Blogger ImmortalMan said...

Islaam was female? How?

 
At 4:29 PM, Anonymous Anonymous said...

because she was genetically identical to the sister upon which she was growing. They were formed from the same fertilised egg (as all identical twins are) though sadly, the separation into two separate embryos did not happen.

 
At 1:12 AM, Anonymous Anonymous said...

I also live with a parasitic twin. I did not know he was here until last year. He is very sick but he is very much alive. He too is very deformed and so am I. I want to know more about how to care for him cause we r now 42 and I have been Told by doctors by me being small and sick that eventually he will start 2 eat off my organs to survive cause I CANT eat very much due to ccrohns really need help figuring this out THANK YOU

 
At 12:17 PM, Blogger My Opinionz said...

This comment has been removed by the author.

 
At 12:21 PM, Blogger My Opinionz said...

I lost a child 13 years ago, he died as a tiny baby. I couldnt imagine having to make that decision. Oprah showed her true disgusting self. I am positive she lost "fans" freaken pig!

 
At 12:24 PM, Blogger My Opinionz said...

I didnt see anything about a 3rd baby?

 
At 12:26 PM, Blogger My Opinionz said...

Manar died? When? Shit i need to find an update. I know islaam died but not mamar

 
At 12:31 PM, Blogger My Opinionz said...

Yes exactly. Do people even realize that had Islaam remained attached to Manar they BOTH would have died? As a mom, as a mom who has LOST A CHILD i still would have sacrificed one to save the other. Without a doubt. I am not being mean i am being real

 
At 12:36 PM, Blogger My Opinionz said...

Are you serious? So i am gonna take into account that youre young and clueless. First of all the chances you have ever been around even one child like manar and islaam is laughable cause that birth defect is extremely extremely rare. CP, and the stuff you mentioned is nothing like what they dealt with. Islaam is NOT breathing on her own. Every single breath, heartbeat everything is done by her sister. Islaam couldnt live for even a second without her sister. You know nothing about those kinds of defects and your entire comment makes you soumd like an uneeucated stupid 8yo

 
At 12:39 PM, Blogger My Opinionz said...

When did manar die? Link?

 
At 12:41 PM, Blogger My Opinionz said...

I had my stillborn at 21.5. Sending you love momma, its NOT your fault!!

 

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