Passive vs. Aggressive

by Kathy on January 18, 2008 · 7 comments

in CHD, FET #1, Molly, Sean

I got a call late this morning for Dr. Cuneo, our perinatal cardiologist. Dr. Cuneo explained that after reviewing the information they learned from our echocardiogram on Wednesday, she thinks that Molly’s heart might start to fail sooner than she originally thought and that she would like for us to return on Wednesday, January 23, instead of waiting until Wednesday, January 30, if we are still open to taking an aggressive approach when the time comes.

I had actually planned to call Dr. Cuneo today, in effort to get some clarification about what she thinks Molly’s chances really are and some more information about the patients her colleagues had treated who had babies with similar diagnoses to Molly’s. I hadn’t formulated my questions yet, but was able to wing it and got most of the answers Bob and I were looking for. I explained to Dr. Cuneo that based on our reproductive history, my having already had two c-sections, reminding her that we have three frozen embryos that we feel a responsibility to and would like to give a chance to/at least attempt to try with someday, that we are considering a lot of different factors right now. She understood. I told her that we see reasons to seriously consider both the passive and aggressive approaches with Molly.

I shared with Dr. Cuneo some of the reasons we would consider being passive, mainly if there is little to no chance that Molly will survive in utero, no matter what we decide to do or not do, we struggle to see the point in prolonging this for everyone involved. She did tell me that even with the passive approach it can take awhile (she wasn’t specific in how long) for a baby with Molly’s diagnosis to ultimately die in utero. Dr. Cuneo also clarified that whatever point we might choose to take a passive approach with Molly’s heart, that we would essentially be done with Dr. Cuneo and she would refer us back to our regular OB. Then our OB would manage things from there on out, basically monitoring us periodically, I am not sure how often, via ultrasound until Molly were to die. At which point, depending on how far along I was, I would either be induced in effort to try for a vaginal delivery or if it was after Molly was 24 weeks gestation, she would like be born via c-section.

When we talked about the aggressive approach and I asked for clarification about the 28 weeks gestation that some of Dr. Cuneo’s colleagues patients’ babies had made it to before they died, she was able to explain that it wasn’t so much an average as an outer limit. In that she knew of at least one baby that made it that far, with a similar diagnosis, that was made at a similar point in gestation as when Molly’s diagnosis was made. However, she also knew of a baby who only made it to 24 weeks and another with whom the heart failure began at 20 weeks gestation, the mother began the terbutaline that week and the baby had died, or at least the medication wasn’t helping the heart rate rise, by the very next week. So even if we try this option, she really has no idea how effective the terbutaline might be for Molly, since every patient is different. Also, one of things that Bob and I have discussed, if we do decide for me to try terbutiline, when the time were to come, is that if the side effects were too much for me, I could always stop, but at least then I would know I at least tried.

I also asked if the babies were born alive at 24 or 28 weeks and Dr. Cuneo said no. She explained that babies with heart defects as serious as Molly’s are not strong enough for surgery or to survive on heart medications outside of their mother’s uterus before 32 weeks and really the further they can get to full term, the better chance they have to be able to survive any surgeries they might need to undergo in the early days of life, including a potential transplant. Also, I am not sure if I shared in my post on Wednesday, but Dr. Cuneo told us on Wednesday, that the transplant attempts with babies with similar heart defects to Molly’s, that she was aware of, have not been successful. She only knew of two or three attempts by her colleagues at All Children’s Hospital in Florida.

At one point I even tried to get from Dr. Cuneo what she really thought/believed would happen with Molly, based on her knowledge and experience, regardless of if we go passive or aggressive, and she did admit that the chances are very slim (though I don’t recall the exact words she used to get her point across) that Molly will survive in utero long enough for her to be born alive and strong enough to be able to withstand potential surgeries that could give her a better post-natal chance at life. However, she did not say it was impossible. Here in lies our dilemma

If there is any chance what so ever that Molly could survive to birth at a reasonable gestational age, don’t we owe her that much? We used assisted medical technology to conceive Molly and a variety of hormone replacement medications helped to sustain her in my first trimester, so why would we stop now, in terms of using every possible medical option, to give her a chance at life? We understand that the side effects of my taking terbutaline could and would likely “make me crazy” temporarily, as Dr. Cuneo so eloquently put it, however, again, isn’t it worth it if Molly has any chance? I also struggle with my faith in regards to all of this. I believe in God. I believe in miracles. So I also want Molly to have every opportunity for a miracle in this situation and I am afraid that if we are passive, she has less of a chance for a miracle to take place that would allow her to stay with us longer her on earth, before it would be time for her to go to heaven.

All that said, I totally get in my head the rational reasons, that make a lot of sense, that if her chances are slim to none, why put Bob, Sean, Molly, our families, friends and me (especially my body) through all of this if the outcome will essentially be the same, just prolonged. It’s my heart that is having trouble getting on board. I know that we have three frozen embryos to remember and consider in all of this. However, I also want to give our daughter, who will be 17 weeks gestation tomorrow, every reasonable chance at life. I/we will have to live with our decision for the rest of our life and so whatever we decide we need to be able to make peace with.

Bob and I have discussed this at length. I have also done so with my parents and Bob’s mom. Though all are very supportive of whatever we decide, a few of our family members have let us know that my potentially being on terbutaline worries them. We have a relative that was on terbutaline for six weeks for pre-term labor in 2002, with a child who is now almost 6 years old. We have been told how much that scared some of our family members at the time. Our relative has also shared with us that it was a horrible experience and though she doesn’t regret doing it at the time for her child, she since has read things that make her question why her doctors prescribed it, when there are alternatives for pre-term labor and some people claim there are significant dangers to the mother and some even to the baby that may out weigh the advantages to using it.

I did find this description on the March of Dimes website yesterday about the potential side effects to mother and baby:

Beta-mimetics (terbutaline, ritodrine)

Possible side effects for the mother: Rapid heartbeat, fluid in the lungs, poor blood flow, low blood pressure, fast heartbeat, high levels of sugar in the blood, high levels of insulin in the blood, low amounts of potassium in the blood, reduced amounts of urine, changes in the function of the thyroid gland, shaking, nervousness, nausea or vomiting, fever, hallucinations

Possible side effects for the baby: Fast heartbeat, high levels of insulin in the blood, low or high levels of sugar in the blood, enlarged heart, poor blood flow, low levels of calcium in the blood, jaundice (yellowish color of the skin and eyes), low blood pressure, bleeding within the brain or heart

So that is what we know and what we are working through right now. One last thing I want to share, that also leads me to consider the aggressive approach, in terms of potential miracles, though I wouldn’t hold my breath (I get that a miracle for our Molly is highly unlikely), is a quote, made by Dr. Cuneo, our perinatal cardiologist, that I found online in an article from the Chicago Sun Times newpaper in December 2002. A baby boy, who was born two months premature with heart failure and was given little chance to survive, withstood a host of surgeries and with each one his doctors were beyond happily surprised that he made it through. At five months old, the day the article was written, he was going home for the first time, he was healthy and expected to live a relatively normal life. Also, the article referenced that at the little baby boy’s lowest point in the hospital, when his body seemed to be failing him and the doctors thought for sure he was going to die, his parents decided to have him baptized and the next thing they new, things turned around! Which brings me to the quote from Dr. Cuneo, “I’ve been in this business long enough to know that sometimes, rarely, there are miracles, and this kid is one of them.”

I keep coming back to that story, to the quote from our/Molly’s doctor. I think about what our Molly has been through thus far, to get her to this point, our overachieving embryo that became a fetus and now we know to be our daughter, a real fighter. All of this makes me want to believe that it is possible that Dr. Cuneo could witness another miracle and that miracle could be our Molly.

Thank you for letting me get this all out here. I know this was another very long post. It is therapeutic for me to express what I am going through, in preparing to potentially have to make this decision, along with Bob, as early as this coming Wednesday. We so appreciate your thoughts and prayers.

Also, if any of you have any experience with or knowledge of the pros and cons of terbutaline, that you are willing to share, feel free to post a comment here or email me. I am not looking for you to judge us or try tell us what to do, as we are trying to make this difficult decision, however if you have experience or insights that you believe might be helpful to us as we try to discern this, your feedback is welcome. Thank you.

{ 7 comments… read them below or add one }

1 SommerNyte January 18, 2008 at 5:55 pm

I know that you will come to the best decision for everyone involved. I can’t imagine the agony this is causing you, but I know that Molly is so very loved and I am praying that she gets her miracle. She deserves it, as do all of you. (((hugs)))

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2 Melinda January 19, 2008 at 1:43 am

I’m praying that you get your miracle for Molly. Big hugs. **

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3 Anonymous January 19, 2008 at 2:29 pm

My friends have recently gone through open heart surgery for their daughter who was originally diagnosed with Tetrology of Fallot(I hope its spelled right), but turned out to be something that would mimic ToF and actually hadn’t been seen here in Canada. Their beautiful daughter was a couple months old when they had the surgery done and thier lives are just now starting to get back to “normal.” Their daughter is healthy but will require follow up and may have issues down the road. They have seen so much joy, sadness, stress, exhaustion, pain, heartache, relief and love in the last few months.

No one can tell you what you should do. This is a very personal decision. If I were in your shoes would probably want to pray for a miracle too…that my little angel would be able to show the world what she’s made of and over come all odds. And if she were my first child I would probably do that. But for me having other children(and this is only my personal opinion as someone who has never been there) I am not sure I would continue on with an aggressive approach. And until I became a parent I never would have spoken those words. But I feel that with my other children, it wouldn’t be fair to take on such a serious issue that will likely not have a miracle outcome. So much time and emotion is invested into a sick child. I know what my friends went though. Saw how upsetting and tramatic it was. How they spent many nights away from their son. Slept in the hospitals…I still don’t think their marriage has recovered from teh strain, but I do believe they will get back to the strong unified couple they have always been. But they just spent so many nights apart and felt so many emotions that there was strain.

As I said…no one can tell you what to do…you may not even get the chance to decide…but no one would think badly of you(and shame on them if they did) if you chose to terminate or not have any intervention. They aren’t the ones that would have a son missing his mother and father, and have to go through birth or a surgery that you’ll have to recover from while going through all this(I’ve had 3 c-sections and can’t imagine).

I wish you much luck and peace with your decision on how to approach this. If you choose to take either the passive or the aggressive approach, I pray that you are at peace with your decision and you make the right choice for your family. Your Molly is a licky girl to have parents and a brother that care so much for her.

-Alexandra

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4 Anonymous January 19, 2008 at 5:08 pm

We are praying for a miracle for Molly. It’s a beautiful name.

I know you spoke of the “now I lay me down to sleep” website…

have you considered having a 3d or 4d ultrasound? My sister just had one and it is amazing…from the scan you can see she looks like my sister….

Hugs, I can’t imagine what you are going through.

deb

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5 twinboysmom January 19, 2008 at 10:39 pm

I was not actually on terb for my preterm labor (I was on mag and procardia) but I do know a lot of people that were (other twin moms like me) and they had very little or no major side effects. I’m no expert obviously, but it isn’t uncommon in cases of multiple pregnancies to be on terb for weeks and in some instances mos. Good luck with your tough decision and thank you for sharing.

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6 Fertilize Me January 20, 2008 at 7:22 am

Alittle late on the comments, my friend is on terbutaline now for 2 weeks. (for pre-term labor). At first she was experiencing vomiting but now has basically no side effects from it. She is in the hospital on bedrest and will remain there until her baby is born. She is only 24 weeks along now.

I know it is not the same -but thought I would share.

I think Molly is a beautiful name, I also believe in Miracles and Prayer – I amprayig both for you, Molly and your family!

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7 Natalie January 20, 2008 at 11:51 pm

My thoughts and prayers are with all of you and sweet Molly. I’m just so sorry that you are faced with this, but know that God is watching over you and I hope and pray for a miracle. Tons of hugs!

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