news item: Latest IVF Scare: ICSI and Intellectual Disabilities

The news was full of dramatic headlines about the results of the latest IVF study last week. This study, the first to compare IVF treatments and the risk of neurodevelopmental disorders in children, found that ICSI was associated with an increased risk of intellectual disability and autism in children.

Researchers analyzed over 2.5 million Swedish birth records and compared those born via IVF with those conceived naturally. Here’s the data:

  • 1.2% or 30,959 children were born via IVF
  • Of the 6959 children diagnosed with autism, 103 were born via IVF
  • Of the 15,830 with intellectual disability, 180 were born via IVF

The Good News

While there does not appear to be an increased risk for autism for children born from IVF, there is a small increased risk of intellectual disability for children born from IVF: about 47 in 100,000 infants born from IVF compared to 40 in 100,000 for those conceived naturally. Unsurprisingly, this increase disappeared when researchers factored in multiple births.

The Bad News

More concerning, however, was what the researchers found when they compared outcomes by IVF procedures: fresh embryos, frozen embryos, ICSI, and if ICSI was used, how the sperm was obtained (surgically or ejaculated).  The researchers found that children born from IVF utilizing ICSI (regardless of fresh or frozen embryos) were at a 51% increased risk of intellectual disability (62 to 93 births out of 100,000). Even when the researchers adjusted for pre-term and multiple births, IVF using ICSI and fresh embryos was still associated with an increased risk of intellectual disability.

The news outlets are interpreting these findings as a much-needed reminder that male-factor infertility exists and could have ramifications for couples to consider since ICSI began as a treatment for male infertility.  What many of the articles ignore is that clinical usage of ICSI has expanded beyond male-factor infertility to be used for many patients undergoing IVF. My husband does not have male-factor infertility, but our eggs were fertilized using ICSI during both of our fresh IVF cycles because, as this article notes, ICSI works.

The problem is that injecting the sperm into the egg bypasses the “survival of the fittest” process most sperm have to go through to fertilize an egg. I’m speculating here, but it’s likely that the line of though most embryologists and clinics take is that if the sperm is bad, the egg won’t develop or the embryo will arrest before transfer or freezing or will result in an early miscarriage. Nature’s safeguards will still prevail.

I’m concerned that this study and the emphasis it places on male-factor infertility will confirm the general public’s tendency to believe that ART is playing God and that interventions such as IVF and ICSI allow couples who possibly should not be able to reproduce to do so.  I also worry about the despair it could cause couples suffering from male-factor infertility and/or relying on ICSI as part of their treatment arsenal: they really are genetically inferior.

It’s important to remember that the outcome of intellectual disability after ICSI is still very rare and that ICSI remains a safe option for the overwhelming majority of couples using it.  These types of articles frustrate me because they tend to overstate the results of these studies almost gleefully: of course IVF is unsafe. We told you so!  The bottom line is that having children, having healthy children, is a crap shoot that every couple faces regardless of whether they use ART or conceive naturally. And reproductive science continues to advance all the time. On the heels of the sensational IVF/intellectual disability headlines came the news about Connor Levy, a baby born after his parents had cells from their IVF embryos sent to Oxford for scientists to analyze for genetic abnormalities. The results of the analysis enabled the Levys’ doctors to transfer the best embryo; the screening process is being hailed as revolutionizing IVF and potentially reducing the number of multiple births.  Maybe in a few years, we’ll regard the study’s findings about ICSI as a quaint example of IVF’s earlier days.

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What do you think of the results of the survey? Did you use ICSI? Would it change your usage of ICSI?

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Keanne of Family Building With a Twist in her own words: I’m KeAnne (like LeeAnne w/ a “K”). Mommy to 1. Wife to someone who knows how my mind works. Scary (you should see what goes on in my mind). Owned by 3 cats. I work full time and don’t craft or DIY (you’re welcome). I like books, conspiracy theories, Downton Abbey and cooking. I dislike chocolate, zinfandel, carpet beetles and experts. Expect over-thinking, the occasional rant, strong opinions and the occasional (OK, often) piece of useless knowledge.

news item: canadian author explains how babies are made without sex or gender

On Monday (Canada Day, as it were) I found this news story in a roundabout sort of way. The short version is that I was reading a new blog called Tiny Human(s) for Two Queers and saw the book mentioned. In the comments, I saw that April recommended sending it to us here at PAIL. I decided to check it out before she emailed (and sorry to beat you to the punch April!) My first thought, was YES! And then I went to read the article, which more or less had me at “Hello”:

Not every baby comes from a mommy and daddy who fell in love. Sometimes, kids have two moms, or a single dad, or they were adopted. Some babies are conceived through in vitro fertilization or with the help of a surrogate mom.

This article discusses the book What Makes a Baby by Cory Silverberg and illustrated by Fiona Smyth.

What sets this book apart from its predecessors is that it doesn’t refer to moms and dads, nor does it mention gender – there are no blue, tuxedo-donning sperm or pink, girly eggs.

It’s vague on purpose. Silverberg said he describes the rudimentary factors in how his little readers were created. But it’s up to parents to tell them the rest.

“I explain the basics that are true about every child, but I let the parents fill in the details about how (the kids) were made – and it can be as much or as little as they want,” he said.

I still have VIVID memories of the book I was handed to explain where babies come from. It was the usual “When a mummy and daddy love each other very much they give each other a special hug” kind of story with random, graphic details that I can still quote word for word.

Here is the quote from the author that I loved the most:

“We’re just starting to get the notion that a family is a group of people who love each other but just look different.”

I read through this article several times and watched the YouTube video. I have since read (and ordered) the book and suffice it to say that it gave me EMOTIONS. I had serious doubts that this story could be told without sex or gender and was glad to be proven wrong. In my opinion, a resource like this is sorely needed, ALI or not. While waiting approximately 11 minutes for April to email, I started having a vague memory that Josey had mentioned this book before during our “Where Do Babies Come From?” monthly theme back in January. Sure enough, Josey was a contributor to the Kickstarter to get this book going. I chatted with her about it and here’s what she had to say:

When I first heard about this book in February 2012 through the Kickstarter program, I knew that I wanted to give a few dollars to show my support of a project that acknowledged that families are built and babies join them in a multitude of different ways. What Makes a Baby is written in such a way that it’s incredibly open ended – when you are ready to delve into the deeper issues that surrounded your family building journey, this book will be there for you.
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In the forward written by Cory Silverberg, he states “[This book] doesn’t include information about sexual intercourse, donor insemination, fertility treatments, surrogacy, or adoption. But it creates a space for you to share as few or as many of those details as you’d like.” He also includes a free downloadable reader’s guide to help parents feel more comfortable about broaching all of these subjects – http://www.what-makes-a-baby.com/readers-guide/.
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Bottom line – I highly recommend this book to everyone, whether or not you traveled an ALI journey while creating your family. This book will help to explain and normalize the fact that while all families are built differently and that is something to be celebrated, we all share a common humanity, and that is pretty awesome too.
Stella!

Stella!

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Do have this book, or one like it?

Do you think telling this story, in this way, is useful for your family and how it was built?

Do you have any resources of a similar nature to share? Link up in the comments.

Many PAIL Bloggers shared their detailed thoughts on this subject HERE – worth a re-read! It is never to late to leave a comment!

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news item: personhood and A.R.T.

A little over two years ago my husband and I started the IVF (in vitro fertilization) process. We met with the doctor beforehand and discussed how many embryos we would transfer, and what our options would be for any leftover embryos. Our options for leftover embryos were to a) freeze them, b) donate them to research c) donate them to other couples d) do nothing, allow them to follow the natural course of an embryo in a petri dish, they don’t survive.

That decision, one we have kept private, was very hard for us, as I imagine it is for every couple who goes through IVF. The conversations my husband and I had about this issue though, those conversations were vital – and relationship building – for us. We talked about our faith, our finances, our personal feelings, and our gut instincts on what we felt we wanted to do with any leftover embryos.

There are currently conversations being held in state legislatures of the United States that would seek to make the conversations my husband and I had null. Several state governments in America are seeking to pass “personhood initiatives” which would give full legal rights to embryos from the moment of fertilization and place other restrictions on A.R.T.(Assisted Reproductive Technology) procedures. If passed, depending on the state you lived in, would determine whether you had the right to have that conversation my husband and I had, or even if you could pursue IVF.

This subject is a highly charged one. It is entrenched in the greater debate of abortion in the United States, yet has ramifications for couples seeking A.R.T., couples seeking to preserve fertility due to cancer treatments, couples needing to use egg, sperm, embryo donors, and/or gestational carriers. According to http://www.fertilitylabinsider.com:

“Personhood initiatives are one of the most dangerous threats aimed at public access to fertility and perinatal care, and would stand to severely hinder our ability to treat infertility with most assisted reproductive technologies.”

Personhood initiatives could limit the amount of eggs a doctor could retrieve for an IVF attempt, making those attempts much less likely to succeed and eliminating the possibility of freezing any embryos for future attempts. They could also require couples to freeze all viable embryos indefinitely, incurring years of preservation charges.

This issue is complicated. This is issue is important. There are several articles covering this issue and I am listing a few of them here. We hope you’ll read and comment and let us know what you think!

Personhood initiative articles:

Fertility Lab Insider

Resolve, the American National Infertility Association list of articles on personhood laws

CNN, “Could ‘personhood’ bills outlaw IVF?”

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What do you think about these ‘personhood’ initiatives and their possible impact on couples seeking A.R.T.?

If you live outside of the United States does your country/province/state have laws like this or seeking to pass laws like this?

If laws like this were passed, would it affect your future family planning?

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feature post – the what ifs

When I was pregnant with Stella I had, what I feel is very normal for any IFer who finds herself pregnant, pregnancy related anxiety. After trying for so long, and so hard, to get pregnant I wasn’t able to ‘just relax’ and assume everything would be okay with the pregnancy. I was constantly worried about something going wrong. That being said, for the most part things went well, we had a few scares, and a few days bed rest, and a short (yet terrifying) readmission to the hospital after birth. But in the grand scheme of things, everything went fine. Yet I still find myself with some anxiety. Just before I sat down to write this post I was feeding Stella blueberries I had picked when I was still pregnant with her last year and had frozen. And I was telling Stella that this summer she would get to go blueberry picking with me. And my breath caught in the back of my throat, and my gut clenched a little, and a voice in my head whispered ‘as long as everything goes okay and she continues to be healthy.’  For the record, Stella is 100% healthy, but there is still this lingering fear in my head that something could still go wrong.

Yet for all my anxiety and worry, I know that what I have felt is nothing compared to the countless parents who deliver preterm babies, who spend months living in a NICU fighting everyday to help their child live.

EndoJourney is one such parent. EndoJourney literally fought for every single minute to keep her child in her womb. And when he was born at 24 weeks and 5 days, she continued that fight, becoming a ‘NICU parent.’ And now that her precious baby is home, it’s still a fight, still a worry, the “what ifs” are literally endless.

I cannot begin to fathom what she and her husband have gone through, have felt. And I don’t try, not because I don’t sympathize with her, but because I know I cannot grasp it and I don’t ever want to sound like ‘I know’ what she has been through. I don’t. I do know the sense of overwhelming worry, but I don’t know it on her scale, on her experiences. When I read her post “The What Ifs” my heart immediately recognized the ‘worry of a Mom.’ And my brain recognized that she was experiencing it on a whole other level. A level I couldn’t begin to grasp. And my heart went out to her. Not because I knew what it was like for, but because I didn’t. I don’t know what it is like to have a baby born that early, to spend  months in NICU, only to go home and still be assaulted by the ‘what ifs.’

I have worried about writing this because I do not have first hand experience on this topic and I do not in any way want to seem like I am trivializing the journey of NICU parents. I want to share the journey of a true Mommy-warrior and her warrior-husband and warrior-baby, who have fought for life and won, yet are still experiencing the ravages of that battle. I hope you’ll read EndoJourney’s “The What Ifs” for a glimpse at what an amazing Mom she is.

As always, comments here are closed so you can go visit EndoJourney and share your thoughts there.

featured post: “Full Circle” via 3 Bed, 2 Bath, 1 Baby

Julia submitted this post of hers (you can do this too by clicking here and filling out the form!), and it’s a great, thought-provoking post about coming full circle.

I would guess that all of us who are PAIL have experienced the feeling of coming “Full Circle” at one point or another. Some people notice it when they have flashbacks at a restaurant they were at during a miscarriage years ago but where they are now corralling their child, some people feel it most around a holiday that used to make them sad but during which they now rejoice, and others (including Julia) experience that feeling of coming full circle when they stop back in to visit one of the people who made it all possible.

I battled a lot about whether I could be strong enough to return to my RE’s office with Ethan. So many emotions ran through me as I drove in to park. In the end, I was thrilled I went, and honestly at peace finally with this part of my journey. I wrote this post to talk about my feelings regarding returning to an office where I felt such pain for many years and finally joy.

I live six hours from my RE, so I’ve never stopped by to see him with Stella, though I’ve often considered sending a thank you card to their office for all they did to help me on my path to motherhood. Consider that added to my list of things to do. 🙂

In Julia’s case, she had this to say about her experience about stepping foot back into her RE’s office:

What I didn’t say was how thankful I was.  I tried to hold back my feelings, and I was concerned that I would cry, but we ended up chatting on a friend level about life, rather than her having to play Dr.  What I didn’t say was how much she impacted my life… she helped me to become what I always knew I was meant to be.  She helped to bring the joy and light of my life into being.  For that I will always be thankful.  Always.

Please head on over to 3 Bed, 2 Bath, 1 Baby to check out more of Julia’s post about her “just cuz” meet-up with her RE! As always, comments here are closed so you spread some comment love on Julia’s blog.

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Julia @ 3 Bed, 2 Bath, 1 Baby in her own words:

After 2 years of Infertility, a miscarriage, and Condo and Apartment Living, Julia and Jon have won the game of life with a 3 bed, 2 bath home, and 1 Baby is now on the scene!

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