Five little babies—a set of quintuplets– are clinging to life in a neonatal intensive care unit in Dallas. They were born as the result of “infertility shots” at 27 weeks, 5 days gestation with birth weights ranging from 1 pound, 12 ounces to 2 pounds, 11 ounces. The pictures of these fragile infants break my heart–both for their suffering as well as for their parents, Gavin and Carrie Jones. Although all five babies are alive, they are far from out of the woods. In their short life, they have already been diagnosed with and undergone:
- Ductus arteriosis- a heart disorder
- Collapsed lung
- Surgery to install a central line catheter
- Fear over brain bleeds
- Breathing problems
- Ventilators
- Apnea
- Fluid on the lungs
- Infection
- Repeated attempts to install IV lines, resulting in blown veins
The survival of these babies is uncertain. And the sad truth is that even if they live, many children of higher order multiple births struggle for life with issues such cerebral palsy, learning disabilities, lung/breathing problems, vision problems, and developmental delays. If you are of the praying sort, please include these babies and this family in your prayers. In particular, please pray for Seth, who is not doing well and heading in the wrong direction.
Much has been made of the quote from the parents that they laughed when they saw the sonogram. Some people have interpreted that to mean that the parents were flippantly laughing in the funny ha-ha sort of way, but I’m certain they meant it in the “OMGosh, what are you going to do other than laugh” sort of way. But the dad’s statement to the press that it was a complete surprise had me scratching my head. How in this day of modern medicine and ready availability of medical information could someone taking fertility shots have been surprised by the conception of higher order multiples?
I was curious enough and felt bad enough for this couple to find their blog. As I read their pregnancy journey, I celebrated their good weeks, weight gains, and well wishes, and shared their bad weeks, pregnancy complications, and premature birth. They are missionaries for Wycliffe, a bible translation ministry, in Papua New Guinea. (They were on an extended furlough in the US when they underwent fertility treatment.) I’ve known several Wycliffe missionaries and liked all of them. They seem to be an adventurous, fun, and open-minded lot, and the Joneses are no exception. It made me feel all the worse for them because I really liked them.
As I read their blog and listened to their press conference (see below), I realized how little they understand about fertility treatment. Keep in mind that this is an educated couple. Both are college graduates; the dad has advanced training as a helicopter pilot/instructor, and the mom has finished all the course work for a doctorate in public health. If they could make the following statements, what does it say about the understanding of the general public?
- Humanly/physically speaking, this should not have been able to happen. (We didn’t do in-vitro.) From their blog.
- “We didn’t even do IVF, I was just taking shots.” (From the mom at the press conference below.)
- “I didn’t realize how much the shots would affect the output of eggs.” (From the mom at the press conference.)
This misunderstanding is perpetuated by the press. One of the reporters at the press conference said: “When I hear quintuplets I think of IVF.” And in a recent article about a 48 year old Australian woman who is expecting quintuplets any day, the journalist assumed that the babies were conceived naturally since the mother “had not used IVF”.
{Sigh} Almost all higher order multiple births result from injectable ovulatory stimulating drugs (“fertility shots”) combined with either intrauterine insemination (artificial insemination) or intercourse, not IVF. The only exception I know of is Nadya “Octomom” Suleman, and that case involved an emotionally unstable woman and a highly irresponsible doctor.
All children are blessings, and all births worthy of celebration, so I hope you will not take this wrong when I say that I think this birth is a needless tragedy causing untold suffering to these five innocent children and to their parents. Without question it is a failure of infertility medicine. I worry that this fact may get overlooked in all the media excitement over quintuplets and our national obsession with multiple births.
How in the world could an educated couple not understand the risks? And much more to the point–how in the world could a fertility clinic not make sure they fully understood the risk before the procedure and not monitor them more carefully to prevent it? I don’t know the details of their specific case, and the mom has alluded to the fact that a sonographer made a mistake, but given the extremely high risk for multiple births from injectable gonadotropins, multiple backup monitoring should have been in place to prevent a single mistake from having such catastrophic affect, and the parents should have been thoroughly prepared that even with careful monitoring, quintuplets could result.
In January of this year (2012) we did a Creating a Family show on how to weigh which form of fertility treatment you should choose considering success rate, cost, and risk of multiple births—Clomid, Medicated IUI, or Straight to IVF? It was a really good show, if I do say so myself. Here’s a very brief summary of the relative risks of multiple births with different fertility treatments. Keep in mind that the natural twin rate in the US is roughly 1%.
Clomiphene Citrate (brand names Clomid or Serophene) and Letrozole (brand name Femara)
Clomiphene citrate and letrozole work on the woman’s brain to make her body ovulate. The risk of twins is approximately 8-10% for clomiphene citrate and slightly lower for letrozole. The risk of higher order multiples is extremely low. These drugs are taken as pills, are relatively inexpensive, and are most effective for women who are not ovulating.
Intrauterine Insemination (IUI) with Injectable Gonadotropins (brand names include Bravelle, Follistim, Gonal-F, Menopur, and Repronex)
Gonadotropins are fertility medications given through shots that directly stimulate the ovaries to produce eggs, and can be used with artificial insemination (IUI) or in vitro fertilization (IVF). When used with IUI, the goal is to stimulate the ovaries just enough to produce two to three eggs, and not more. Unfortunately, doctors have little control over the number of eggs that will mature with these fertility shots. As a result, some reproductive endocrinologists believe the risk of higher order multiples is simply too high, and they do not perform this procedure. Other fertility doctors think that this procedure can be done safely IF extreme caution is taken, including:
- Extensive pre-assessment of the woman’s egg reserves.
- Very conservative dosage of the gonadotropins, especially with the first cycle.
- Intense monitoring with blood tests and sonograms.
- An agreement with the patient to cancel the cycle if more than 2 to 3 eggs mature.
The last point is often the sticker. Most fertility patients do not have insurance coverage for fertility treatment and opt for IUI with injectable gonadotropins because it is less expensive than IVF. However, by the time the woman has reached the point in the IUI cycle that the doctor is able to tell how many eggs have matured, she has already spent about $2,500-4,000 on the fertility medications and likely another $2,000-3,000 on monitoring and clinic costs. In other words, she has already spent $7,000 (or more). Throwing that much money down the drain is a tough pill to swallow for someone who chose this risky path in order to save money. It puts unbelievable pressure on the doctor to not cancel the cycle and tempts many a patient to go home and have unprotected sex if the doctor does cancel the cycle.
The exact risk for multiple births from a medicated IUI cycle is hard to give because it depends on so many factors: skill and attitude of clinic doing the procedure, careful monitoring, doctor’s willingness to cancel the procedure, and the patient’s willingness to not risk sex. As I said above, almost all the higher order multiples you have heard about resulted from this procedure.
Another reason that the multiple birth risk is hard to predict, is that most patients when faced with a higher order multiple pregnancy as a result of this procedure opt to selectively reduce the pregnancy. Some doctors will not perform an IUI with injectable gonadotropins unless the patient agrees in advance to selectively reduce if more than twins are conceived. The decision of what to do when faced with a higher order multiple pregnancy is excruciating for most patients.
In Vitro Fertilization (IVF)
Gonadotropins are also used with IVF, but the risk of higher order multiples is low because the doctor is in control of how many embryos are transferred to the woman’s uterus. Reputable clinics are very conservative with the number of embryos, and there is a strong push in the fertility medical community to only transfer one embryo in women under 40. Yes, it is possible for naturally occurring twins to occur once the embryos are transferred thus resulting in unexpected triplets or quadruplets, but this is by far the exception.
I didn’t write this blog to beat up on the Jones family. I don’t really know what happened in their case. What’s done is done, and I’m praying like crazy for those precious babies and their parents. But another one of my prayers is that awareness of their misfortune might prevent another family from this suffering.
Image credit: Gavin & Carrie’s Blog
Came here today because searching for info on the Krakow quints who were born just a week or so ago. One of them has already died. Noone mentions that the mom must have undergone fertility treatment. The parents already had six or seven children. What makes me really mad is how the Media treat this as a natural miracle.
It’s an interesting story, isn’t it? I don’t believe we are owed any answers about their path to parenthood. Whether they used fertility treatment or not is their private medical story. It also seems to be another instance of the media (honestly, for decades now!) showing its lack of education about fertility, infertility, and adoption issues. It still baffles me that their lack of understanding translates to (or maybe contributes to?) the ongoing stigmas of infertility and adoption.
(Not that this story is about adoption, but the similarities are seen in the overlap of the two areas.)
Thanks for reading and connecting this older article to current events!
What I don’t get is why all you busy body women care? Esp. When this “college educated” couple (your words not mine) can afford to care for and apparently wants them! I doubt that a doctor or clinic didn’t inform them, maybe they threw caution to the wind or maybe they are being less than truthful! They are pretty young and married, mabye they had sexual intercourse against docs orders ( because people never do that, huh?). Point being, isn’t it so lovely knowing their are people like you out in the world, worrying about what other people are doing! No, it is not, it’s creepy! Get a life or better yet worry about the thousands of tortured, drug, addicted babies born every year, who are born in pain! Worry about those parents who cannot be good parents, anybody but capable people who can support their kids in every way! Better yet, stop being such a busy body, makes me wish I wasn’t female when I meet or encounter women like you all! Why is it women become mothers and suddenly some seem to think they are experts, yeah right! It’s not you being concerned as a Christian either because Christians aren’t suppose to judge, yet we know just how hypocritical most Christians are! I love Jesus Christ and I believe everything a Christian does except I follow the words of Christ! Since the lord new and planned their destiny, as a so called Christian, you should know that already! Can’t pick and choose but you make it crystal clear that you do not know what being a Christian is about! Im judging and opining but I’m not judging! Hahaha okay!
I think the journey is what makes us mama’s no matter how tough it was or the cost..
Thanks Gemma.
You are very welcome. Wish I had come around much sooner. 🙂
Julie – amazing. Captured everything perfectly and I laughed at the coffee bit. A few tears over how perfect this article was.
Stacey, no board certified OB/GYN should be providing such drugs without full disclosure. By this time (more than a quarter of a century after they came into use) every OB/GYN has been fully exposed to this in his or her “basic training”!
Pat, sometimes I think that injectibles are an early treatment provided by regular OB/GYNs, not so much for REs, at least not without lots of monitoring. So, sometimes the patients do not get the information that they would if they were at a fertility clinic.
Stacey, ANY doc, not just “good” ones, providing such treatments should be hammering away with this kind of information!
Also, considering their religious views, they probably were not open to selective reduction, which is what is normally what is recommended for pregnancies of more than triplets. That is something a good doc would have discussed with them BEFORE cycling.
Stacey, yes, the time for discussion and thinking through all the “what ifs” should be BEFORE the infertility treatment. Well said!!!
A good doc will have also briefed you an the ramifictions of carrying multiples. Basically, you lose about 4 weeks of gestation for each extra baby. Singletons are born at 40 weeks, twins are about 36-37 weeks (still take home babies), triplets are born about 32-33 weeks (ours were at 31 weeks & 6 days). Babies born before 34-35 weeks are probably going to be spending time in the NICU and the earlier they come, the more likely they are to have serious health issues.
Actually, IVF is much less likely to produce higher-order multiples than taking “fertility shots” is. With IVF, the doctor can limit the number of embryos transferred to 1 or 2. In our case, one of those two embryos then decided on its own to separate into indentical twins…thus our triplets. You only have a big problem when you have an unethical doctor, such as Octomoms that will transfers LOTS of embryos. With the shots, the doctor has no control over how well you will respond. An RE will be doing untrasounds to see how many eggs you have matured and if it is a large number, will not do an insemination and tell you not to have intercourse. But, they can’t really stop you from having intercourse if you want to. My understanding is the Gosselin setuplets were a result of shots, not IVF.
Stacey, I think you are right about the Gosselin sextuplets. As well as all the higher order multiples that you’ve heard of.
I’m so very glad to know I wasn’t the only one who thought, “Wow, how did she not know? Why would she say ‘We didn’t even do IVF’?” I was surprised she used the word “shots” instead of calling whatever drug she took by name. I felt so bad for her that she was so uninformed. Shame on her doctor for not taking the time to help them understand the risks and differences between treatments.
Then again, thinking back I wonder how much my doctor actually informed me of these things when I was doing fertility treatment. I definitely feel I learned a lot more from the internet and my online infertility community than I did from my RE and clinic. It’s also so difficult to take in information when you’re at the clinic. Everything about being there is so overwhelming and it’s a very difficult environment to learn in. It’s easy to just nod your head and go along with whatever the “expert” thinks is best for you. It seems the reality of medicine these days is you MUST be your own advocate and become an expert of sorts yourself on your disease and treatment options.
Great post, and I do wish those parents and little babies the best and am praying for them.
Jen, I’ve heard so often from people that they slip into the following instruction mode once at the infertility clinic. For example, one woman said that they had thought they would only have one or at the most two embryos transferred, went along blindly when the doctor said on the day of transfer that they should transfer three. They ended up with twins, born very premature with many complications–some life long. She said they didn’t even think to question.
I too am praying for this family of the quintuplets. One of the babies is not doing well at all. One is struggling. Three seem to be doing pretty good. I feel for all of them. They have a very long row to hoe, as my grandmother would say.
Wonderful blog post, Dawn! I couldn’t agree with you more!
Pat
Hi Dawn. I thought you, or your readers, might be interested in an article I wrote:http://www.incultureparent.com/2012/08/dear-infertility-patient/
Darn Julie, that brought tears to my eyes. Thank you for sharing the link.
How did they not know the “shots” could do this? I am appalled that their dr. did not inform them of the consequences. I hope those babies are doing well
I feel like there is more to the story that these parents aren’t sharing. I know of a woman who was doing injectables and her doctor canceled her IUI because too many eggs matured. The doctor also told them not to have intercourse. I went through clomid and femara cycles and was monitored on those too. That’s standard protocol isn’t it?
Careful repeated monitoring should be a part of every IUI with injectable cycles. As I said in the blog, some doctors think that even with careful monitoring the risk is too great, while others think that we repeated monitoring and very cautious use of medicine, it is possible to reduce the risk.
Hi from ICLW. I wrote a senior thesis in college — over 10 years ago — about “How to manage the increasing rate of multiples,” and my prime finding was that it was the responsibility of the doctor to educate the parents before using ovulatory-stimulating drugs. Any responsible doctor would enforce selective reduction PRIOR to treatment, or steer the parents toward IVF with 1 or 2 embryo transfer instead.
Since then, I’ve cared for sextuplets in our NICU who were the result of drugs only — and only revealed to their doctor AFTER treatment that they were Catholic and wouldn’t reduce. It’s incredible to me that an RE will *still* treat patients without confirming their plans in certain situation.
It’s a burden to society, to the field of neonatalogy, and to society. Let alone a worse outcome for all the babies who are born. So sad. Thanks for the post.
Dr. W, the problem is that doctors can’t force patients to selectively reduce, even if they agreed to before hand. (And I’m not sure I’d want them to be able to do that.) However, most often, when I hear of situations like this, the doctor has never discussed the real risks before hand. It is only after they realize that they have a higher order multiple pregnancy, that doctors start to discuss the options and risks. I realize this isn’t always the case, but often it is. How did the sextuplets do that you cared for, and do you know how they progressed after they left the NICU?
Stumbled across this article and had to comment. You point out much ‘irresponsibility’ of doctors and potential parents but failed to mention a big factor in this process. Insurance companies! Many now cover infertility treatments but require you to follow THEIR course of treatments starting with less expensive treatments (fertility drugs along with ovulation monitoring/intercourse) then IUI which they REQUIRED 3 failed rounds before they would cover the cost of the more expensive IVF. For us IUI along with fertility drugs failed. So IVF was our last option which thank God was successful. Our endocrinologist was excellent and made us aware of the risks/rewards. I think the author here is ‘irresponsible’ in placing blame on doctors/parents alone as neither wants multiple births given the complications but there is some aspect of nature is still in play here that adds unpredictabile results. And there was no mention that insurance companies dictate these course of treatment, not the doctor nor the patient. IUI failed for us but we would have selected IVF over IUI first if we had the choice. And not because of risk of multiple births but the high rate failure (only 5-20% success rate) with IUI. Coming from a family that knowingly endured all of these treatments for the greatest gift one can have, children, I think it highly ‘irresponsible’ to add judgment to this family when you don’t know their course of treatments, insurance company restrictions, infertility diagnoses beyond a few statements made to the media! Due to HIPAA you never would either. Believe me when I state having under gone all of this treatments ourselves, the last thing this family needs is judgment passed to fulfill your own unsubstantiated agenda. Again our endocrinologist made us aware of the risks, albeit they are higher with each type of reproductive technologies compared to natural, the rate of higher births is still very small.
This is tragic. Do you really believe they were as un-informed as they say they were? Maybe they were – but wow. And they have a long long road ahead of them. If the children survive – they have years of issues that they probably have not even considered yet.
Jennifer, yes I do think they were surprised. I think their is so much misinformation “out there” about fertility treatment, that it doesn’t really surprise me. It does, however, scare me.