When a sonogram revealed a severe birth defect in their daughter, Susan and Saqib Ali both knew what they had to do. Unfortunately, they didn't agree on what that was.
Read the article:
Hard Labor (Post Magazine, April 10)
The Alis were online Monday, April 11, at 1 p.m. ET to field questions and comments.
A transcript follows.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
Susan and Saqib Ali: Welcome to our online chat with Susan and Saqib Ali, a Gaithersburg couple who grappled with an impossible choice when they discovered that Susan was carrying a baby with a severe birth defect. I'm Lynda Robinson; I edited this incredibly powerful stoy. Susan and Saqib are here with me righ now and happy to take your questions.
It has been a very long time since an article so moved me. I admire you and thank you both for being willing to share such a personal and heart-wrenching story. To me, the article demonstrated that there are no easy answers, and the pro-choice/pro-life debate is not a simple black-and-white issue. Most of all, I greatly appreciated the intimate look inside a marriage that was struggling with the most devastating of issues. It put many things in my own marriage into perspective for me.
Do you think that your experience in dealing with such a high-stress situation has changed the way you deal with other conflicts in your marriage?
Susan and Saqib Ali: Susan: It definitely changed the way I know how he handles high stress, so just on a personal level, I now know not to push and let him decide things on his own time.
Saqib: It just makes everything else seem very minor. We had a great marriage before and we have a great marriage now. We feel like we've been tested by fire so when I was going through it, I couldn't imagine any more difficult situation. We know we're together for life (God willing).
Susan: This really helps you evaluate what things are minor, and what matters most. It's easier now to let little things slide because they aren't important at all.
Upper Marlboro, Md.:
I have changed what I want to say in this posting so many times. We buried a little boy after he had 17 hours of life in 1995; he had Potter's Syndrome, meaning his kidneys didn't function. I also did not have amniocentesis; I knew that if there was anything wrong with the child that I would not kill it. Fortunately for me, my husband also felt the same way. In addition, rather than haranguing me throughout the pregnancy, he was very supportive and loving, even though he also distanced himself from the baby when we came to understand that there was not enough amniotic fluid, and something -might- be wrong. We also did not know the extent of his injuries until he was born. His distance helped us to make some very hard and quick decisions during an emergency C-section and when we realized that the baby would not make it and the tubes had to be pulled. However, he never bullied me throughout the process.
My question is to Susan Ali - I would have strangled your husband long before you packed your bags. I understand that people react differently to crisis, but Mr. Ali's constant harrassment read like abuse to me; how did you stay with him for so long? It is is a true blessing of God that either of you managed to stay in the marriage, and I truly hope that you will be able to work out your issues and move forward with other children adn a long life together.
Susan and Saqib Ali: Saqib: I think the key issue is that some doctors were telling us that Susan's life was at risk. I wasn't haranguing her out of mean-spiritedness. I simply felt that as a husband and father, I was charged with looking out for the greater good of our family and not only the well-being of each particular person in the family. I think Susan, at the time, was solely focused on the prolonging the life of the baby, possibly at the expense of herself.
Susan: There was a lot confusion about the diagnosis for my health, and Saqib was extremely worried that I would just collapse and die with no warning. And he was doing his best to prevent that. Although it seems like he was being hard on me, it was all out of love.
First, my heart goes out to you both for your loss. I am currently 19 weeks pregnant with my first child, preparing to have my second trimester ultrasound shortly, and these stories (as rare as they are) scare me to death. My question: had you had a quad screen, triple test, maternal serum, etc. or any other prenatal testing that might have indicated there was a problem prior to your ultrasound? If so, what were the results?
Susan and Saqib Ali: I had all of the prenatal tests and care that are recommended by any ob-gyn. And nothing was discovered until that sonogram. We have no complaint with the medical care. Nobody could have fixed Leila's problems. It didn't matter when they found those problems.
Good luck with your pregnancy!
First of all, I want to tell you how sorry I am about your loss and thank you for sharing your story with us. I wanted to ask you, did you have any trouble with the hospital honoring your wishes regarding not putting your daughter on a ventilator or a feeding tube after her birth?
Susan and Saqib Ali: Saqib: Unfortunately, she didn't live long enough to be put on a feeding tube. We had instructed that the hospital not use a ventilator and that they not operate to relieve the pressure on her lungs. We chose this because the doctors told us that the procedures would be painful and might only help her live another few days. At most.
I know writers have little input into the photos that accompany their pieces, but it was a little ridiculous to have an entire article hinging on the question of whether or not the couple chose to carry their baby to term, accompanied by pictures of them holding the baby and standing by the gravesite. One look at the second page of the article and the question is answered without even reading the caption. Surely there was a better way to do this. It diminished what was otherwise an excellent piece.
Susan and Saqib Ali: Lynda Robinson: I understand what you mean and that was discussed here. Ultimately, we use the best photos available and they were taken after the baby's birth and death. The only photos we had prior to that were the ultrasound images. Susan and Saqib were really generous to give us the photo of them with the baby in the delivery room, which was a really beautiful picture.
I'm not sure how recent the events in this article ocurred, but are there any new updates from lab results? Are the chances for this to occur again pretty low? I hope you do try to have another child, especially if risks of this occurring again might be low. May God bless you both.
Susan and Saqib Ali: Saqib: Yes, I did in fact get tested and my DNA is normal. That means that this was a fluke and there's a less than 1 percent chance of recurrence. However, this is the same chance there was the first time around. And the same chance that anybody could have it happen.
We do both want kids. We obviously do not want to go through this experience again. Other than that we don't know what the future holds.
Susan and Saqib, thank you for taking my question. I read your story (a story to me, but a very real and painful episode of your lives), and it moved me to tears.
Susan, what I'd like to learn from you is, in your choice of continuing your pregnancy, how did you justify the level of care that Leila would have required, not only on yourself, but also on your husband? You ultimately made a decision that would have changed not only your life, but Saqib's life, drastically.
Susan and Saqib Ali: Susan: I always felt that Leila was a real person and she deserved as much chance at life as anybody else does. I understand how her care would have been extremely daunting, but she would have been worth it. Obviously we didn't want her to be in any pain and that's why we decided to make the medical decisions that we did after her birth.
Saqib: As an interesting aside, when we were deciding whether or not to continue the pregnancy, Christopher Reeves died of infected bedsores. And when we were deciding on life-saving measures, Terri Schiavo was also in the news.
First, I would like to commend Saqib for finally being able to step back and honor his wife's feelings, whatever they might have been. Obviously, that was a tough decision to make. What I would like to know is where Susan's getting her strength from not to challenge Saqib's feelings about future pregnancies. I don't believe anyone can understand the feelings a woman has, who is carrying a life inside her, other than another woman who has done the same. Obviously, Saqib cannot share those exact feelings. I understand this is all still very fresh and I do not want this to appear to be a slam against Saqib. I assure you it is not. I am amazed by Susan's take on things to give Saqib his time and hope that one day he may change his mind, but until that day may come, how do you find the strength not to want to bring it up frequently; maybe not as often, or in the manner that he did you during the pregnancy, but here and there. I am also a Christian woman and find great strength in God but I can only imagine that this would be one of the toughest things a woman could face. I commend you, Susan, as well and would like to know where your strength comes from in that area. I truly feel for you both, you will be in my prayers, and Leila is being well taken care of by God and her grandma until she is in your arms again one day.
Susan and Saqib Ali: Susan: All my strength comes from God and I would have never gotten through this without His help. I know Saqib is grieving and needs his own time frame to deal with all of this. So I'm just trying to be patient until he feels comfortable.
Silver Spring, Md.:
First, I want to thank you both for sharing your experience. I wish you both strength as you continue to deal with this terrible loss.
Second, because of a possible genetic predisposition, have you considered adopting a child? It seems that you will be amazing parents and there are so many children out there who need people like you.
Susan and Saqib Ali: Susan: We would absolutely consider adoption. Many of my family members, including my brother, are adopted. Thank you for the compliment.
My heartfelt sympathies to you both . . .
Mr. Ali, in the Magazine article you are quoted as saying: "But it's clear to me that during a pregnancy, I am not an equal parent with full rights. So those nine months are very disempowering. And I won't go through that again."
My question is, what circumstance could have occured during this time that would you made feel an equal parent with full rights?
Susan and Saqib Ali: Saqib: In the end, the decision was 100 percent Susan's. I had to accept that no amount of persuasion could change her mind. If my wishes had prevailed, I would have felt equal. Of course, in that case, Susan would not be happy.
Susan: It's either 100 percent his decision or 100 percent my decision. You can't have half of a baby.
My husband and I lost a baby girl in September; she had a weak little heart. I wasn't as far along as you. I can't imagine what pain you must have faced; my prayers are with you. I hope this question isn't too painful, if it is please forgive me: Did she respond at all to your hugs, your kisses goodbye?
Susan and Saqib Ali: She was sedated to avoid pain. She did not flail or make any sounds. She did move a little and Saqib put his finger in Leila's hand and she moved her hand a little. When Susan talked to her, she did try to breathe. And Susan believes in her heart that Leila could hear her. Saqib doesn't know.
What was the purpose of invading this couple's privacy? You took advantage of their trust and lack of self-awareness during a time of grief. They would never have agreed to this article if they realized how clearly it reveals the imminent end of their marriage.
One can feel great sympathy for both, but this tragedy has exposed the fact that they are fundamentally incompatible. The husband felt disempowered and disregarded, as though he's not even a person; the wife plans to do exactly the same thing if it happens again.
Exposing this irreconciliable conflict to full public view can only hasten the unraveling of their marriage. It is none of our business. Nor does learning about it benefit any of us in any way I can think of.
Susan and Saqib Ali: Lynda Robinson: We published this story because so many couples are faced with this situation and we believe many will draw strength and inspiration from Susan and Saqib. They were unbelievably generous with their time and willing to be so searingly honest about what this was like for them. Their marriage is strong and their spirit is even stronger.
How did the reporter find you, and how did you make the decision to allow this intensely personal and painful experience to be chronicled in the magazine? Did the two of you agree totally on that?
At what point in your journey with Leila did the reporter join you? Thanks.
Susan and Saqib Ali: Lynda Robinson: The writer of the piece, Reshma Memon Yaqub, knew Susan and Saqib. She learned that they were facing this choice fairly soon after Susan had the sonogram and asked if they would allow her to follow them through the pregnancy, whatever the outcome. They trusted her with their story. She was already following them when they learned the baby had hydrops and when Susan went into labor.
What a heartbreaking experience. My condolences to you both. By being so unflinchingly honest, though, I worried that you were setting yourselves up for criticism from all kinds of interest groups that might see your family as a symbol for whatever cause. Why did you choose to share such a personal tragedy in such a public way?
Susan and Saqib Ali: Saqib: The politics of abortion are ugly enough. Leila's life is not a political football. It's a very tragic and personal story that we wouldn't want people to use in that way. I don't want Leila to have come and gone and for nobody to know about her existence. This gives her a legacy. Also, HPE is nasty disease that very few people know about. It's not as rare as people think. It's just that the majority of HPE pregnancies end in miscarriage and nobody realizes the cause. The Carter Center at Stanford University is the premier research center for this disease and we hope to have success in finding a cure and prevention. We hope this story attracts attention to their cause.
Susan: In addition to what Saqib said, we chose to share this story because we now know how traumatizing it is to learn about your child's life expectancy. And we want to help prepare other parents who might have to go through the same thing.
The article mentioned several doctors that you consulted. Did you consider discussing your situation with any crisis pregnancy centers?
Susan and Saqib Ali: Susan: I did discuss it with Rockville Pregnancy Center and they helped me tremendously.
This was a very compellingly written article. Almost read like a suspense novel.
The husband, the article seems to conclude, did what he had to do (accept her decision) in order not to lose his wife. Now he seems determined not to ever go through the same kind of crisis again. I can think of only about 3 ways that can happen, and one of those is for the couple to go their separate ways.
I am sure this will seem like an oversimplification -- but I am sure the article was, too -- but how does the couple plan to keep moving forward, together, with such limited options for the future in this area of their marriage already proven to have them at odds?
I don't see this story as one in which either party necessarily did the "right" thing, except as they each followed personal convictions. It, rather, is a good example of a situation in which -- while two radically different points of view came to the fore in a crisis, and each survived -- the parties involved may need to ask themselves if the future might not be better for each if they are with partners who can be more supportive of their personal convictions without having to go 180 degrees to compromise.
It doesn't mean that either is wrong, it just may mean that together, what they do is create tension unnecessarily.
Susan and Saqib Ali: Saqib: I don't foresee us going our separate ways at all. If we have a way to endure through such a huge crisis, we feel we can handle anything.
Susan: We made a commitment to each other and just because times are hard doesn't mean you get to back out on that.
I just want to thank you both for participating in this discussion. It's very brave of you, given that people can sometimes get critical and judgmental in a forum such as this. A lot of sensitivity is needed here. I find myself cringing at the criticisms directed at Saquib. Saquib, it seems to me you were only trying to do the best thing for your family, by obtaining as much information as possible and trying to understand the implications and make the best decision. Obviously you both experienced a terrible ordeal, and each of you is to be commended for the support you have given to the other. God bless you both.
Susan and Saqib Ali: Susan: Thank you for your kind words.
Saqib: People need to walk a mile in my shoes. I was imagining not only burying my daughter, but also my wife. Unfortunately, in desperate situations like this, a cold calculus has to take over. I made that calculation and decided that the risk to Susan's life was unwise to take.
While many readers have expressed dismay at Mr. Ali's response to his wife's decision, I have to say I had a hard time comprehending why this child would be brought to term. Given rising healthcare costs and limited amounts of care available, I'd like to know what contitutes a viable life to Mrs. Ali?
Susan and Saqib Ali: Susan: One of the problems that we were facing was different diagnoses from all the doctors. Nobody could give us a clear cut answer on what Leila's prognosis was. And I had to hope for the best. Even if I'd known that she wouldn't survive, I wouldn't have chosen abortion.
I am frankly appalled at the analysis that so many readers seem to what to give the two of you about your marriage during the pregancy, you marriage at this point, you marriage in the future, and your choices about having children in the future. I would like to only provide support to you both, for what you have done previously and for what lies ahead. God bless you both.
Susan and Saqib Ali: Thanks for the support.
Thank you both so much for sharing your story, and my condolences to you for your loss.
One thing that really struck me from this article was how the communication worked (or didn't work) with the various doctors -- it seems that each person remembered something different. I know that strong emotion plays a big factor in miscommunications, and this story helped me realize how important it is to remember this when discussing life and death decisions.
Have you reconciled to yourselves the different impressions you got from the doctors?
Susan and Saqib Ali: Saqib: No doctors can give you a definitive prediction of the future. Everything is varying shades of gray. I felt like Susan was latching onto highly unlikely but still possible optimistic scenarios. I felt the most responsible path was to identify the most likely outcome and weigh risks accordingly.
Susan: It was definitely frustrating to sift through all the information. I prayed a lot. God helped me to make the decision that was right. I just wanted her to be all right and now she's perfectly happy in heaven.
Thanks for taking these questions. How important do you think that it is that couples discuss the what-ifs of a risky pregnancy BEFORE trying to conceive? I would guess that Susan's answer would differ from Saqib's and would be interested to see both responses.
Susan and Saqib Ali: Susan: It never occurred to us. We just automatically assumed everything would be fine, the way anyone else would with their first pregnancy. I do know that some of my close friends have now discussed this before having children. But you can't plan for everything.
Saqib: I strongly urge everyone to discuss this before getting pregnant. I also strongly urge people to write living wills. I think a lot our debate touched more on end-of-life/quality-of-life issues than the abortion debate.
I will be brief, as the end of the hour is approaching.
My condolences for your loss. Your graciousness to what I suspect is one reader insisting you divorce is admirable. Your desire to stay together in spite of your differences in opinion is inspiring to me (as a never been married single woman).
Susan and Saqib Ali: Susan: I just appreciate your thoughts.
Susan, I wish to state that I found myself very sympathetic to you. Even if one knows the time spent with someone will be limited, it makes that time all the more precious. I am glad you both made it through this most difficult situation.
Do you both feel the article adequately expressed your feelings? If not, is there anything more either of you wishes to add, or to comment upon?
Susan and Saqib Ali: Saqib: My stance on abortion should be clarified. In normal circumstances, I would never choose abortion for me or my family. However, as a matter of public policy, I don't think Roe v. Wade should be overturned. This was not a normal circumstance. In this case there was a medical justification. So it makes it different.
Susan: I feel that the article was pretty clear on my feelings. And I appreciate how well Reshma wrote it.
I read your story. I am curious whether the state acknowledged the birth of your daughter and issued a birth certificate (and subsequently a death certificate) or was she not recognized in this way by the state? I suppose the length of her life (under 1 hour) may have something to do with that, as well as her gestational age. Thank you.
Susan and Saqib Ali: Yes, Maryland Department of Health and Mental Hygiene certified the birth and death because she did have a heartbeat when she was born and that's their requirement. The Social Security Administration issued her a Social Security number at our request.
Susan and Saqib Ali: Thanks for all your questions. Our time is up. We appreciate everyone's kind words and empathy.