Conceiving After Spinal Cord Injury: Our Perspectives and Experiences

WAGSofSCI

On our social profiles each week, we get tons of messages about conceiving as a couple after spinal cord injury. It’s one of those topics that is not discussed as openly as others due to the private struggles of many couples and misinformation out there. We want to change that!

Now it’s your turn to comment: As a WAG of SCI, Have you conceived after Sci? Are you working on it? Are you familiar with one or all of the processes? What has worked for you? What hasn’t? What’s your story? What are your biggest questions? We want to hear from all of you who have been through this (and those who want more info) as it’s one of the most common messages we receive on our social media pages. No judgements, just resources and stories! Thank you for sharing and for your questions in advance xox

anlyerla

Jacob and I always knew IVF would be our only option for starting a family. 

Jacob was diagnosed with infertility due to anejaculation secondary to his paralysis. He is a T11/T12 incomplete. While Jacob receives most of his care through the VA system, he was referred to an outside urologist to further assess our options. We chose Dr. Jason Kovac. He is one of the top urologists in the state of Indiana and the leader in men's reproductive health. He advised given Jake's complex situation that we proceed directly to a combination TESE. This is essentially the surgical extraction of sperm from a biopsy sample taken from the testis. Jake unfortunately had this procedure done twice. The first one was done in September 2017 (eight years post-injury). After that procedure, the doctor was confident that we had what we needed to move forward. This sample was frozen. That didn't end up being the case (more detail in a bit) and he had to have a second surgery in August 2018. That sample was used fresh. 

While undergoing IVF because of Jacob's condition, it was also determined that I had infertility issues of my own. I was diagnosed with low AMH (anti-Mullerian hormone) and ovarian reserve. I was a 0.6 ng/ml which meant my reproductive performance even with IVF was likely to be low.

We ended up doing three IVF stimulation rounds. Here were our results. Reasons for our failure were ultimately inconclusive but they believe it was due to a combination of poor quality eggs and severe DNA fragmentation in the sperm.

Cycle 1: Stimmed 14 days. Meds used: Menopur, Gonal-F, and Cetrotide. Max doses. Frozen/thawed sperm with ICIS (intracytoplasmic sperm injection). 9 eggs retrieved, 7 mature, 5 fertilized, 0 blasts. February 2018.

Cycle 2: Stimmed 16 days. Meds used: Menopur, Gonal-F, and Lupron. Max doses. Frozen/thawed sperm with ICIS (intracytoplasmic sperm injection). 9 eggs retrieved, 7 mature, 5 fertilized, 0 blasts. May 2018.

Cycle 3: Stimmed 14 days. Meds used: Omnitrope, Menopur, Gonal-F. Max doses. Fresh sperm with ICIS (intracytoplasmic sperm injection). 9 eggs retrieved, 9 mature, 8 survived the freeze (eggs were frozen to coordinate use of fresh sperm), 6 fertilized, 0 blasts. August 2018.

We ultimately ended up doing no transfers due to the lack of blastocysts. It was a devastating long and heartbreaking year. 

Our first three cycles were covered by the VA under a billed lay-named #ivf4vets. #ivf4vets is actually the Women Veterans and Families Health Services Act S700 and HR1681. There is limitations to the funding however and with how the law was written. At the time I am writing this, 2/20/2019, the funding is NOT permanent. It also DOES NOT allow the use of donor gametes. Unfortunely, due to the length of time post-injury for Jacob and my egg quality issues, we need donor material. There is legally no exception to this - anyone stating otherwise has been misinformed. In order to utilize #ivf4vets, the veteran must have service-connected infertility. In our case, Jake's paralysis. 

After our three failed cycles, we began to weigh our alternative options. We considered domestic infant adoption as well as adoption through Indiana's foster care system. At this time, we don't feel those are the right routes for growing our family. Although, I do have the personal line to our governor who has pledged to help us to remove any barriers that arrise should we choose to adopt from the system in the future. Foreign adoption is not on our short list at this time. 

We are currently, about to undergo a double donor cycle. We have chosen and purchased donor sperm. We used Xytec. We chose an egg donor through our fertility clinic, Midwest Fertility Specialists (located in Carmel, IN). Because we are opting to split our donor's eggs with our clinic, we anticipate getting at least two good quality embryos. Our success rate is projected to be about 70%. The estimated cost including cost of the sperm, the donor's IVF cycle, one FET (frozen embryo transfer), and ERA test (endometrial receptivity analysis), required counseling session, as well as various other items like initial consultation, the cost will end up being approximately $25,000. All of which is due before or at the time of service (so we've already began paying some expenses). This is completely out of pocket. 

Because some may ask, we used Dr. Laura Reuter for our first two cycles (do not recommend for various reasons) and Dr. Matt Will for our third. He will also be doing our donor cycle. 

While we haven't yet had success in growing our family, I am well-versed in IVF and extremely knowledgeable in #ivf4vets as well navigating the VA healthcare system. I am always willing to share my experiences and my resources. 


- Ashley

Emms

@anlyerla I'm in awe of your openness and the courage you had to get through the last year of cycles.  I wish you the best of luck for the double donor cycle. I wish you the very best of success and happiness, no matter how you grow your family xx

I've not had a problem getting pregnant so much as keeping a pregnancy past 10 -12 weeks. After being with the fertility clinic in our own hospital for years, I went to a recurrent miscarriage clinic at another hospital for testing and more attempts, but nothing was found to account for losses. They told me that 20% percent of recurrent miscarriages there was a known reason for and the other 80% there was no reason found, yet. I just happened to fall in the 80%. I've since had elevating FSH levels, I'm on the 40 side now so I've put my focus into other things. I spent all of my thirties focusing on the chance of keeping a pregnancy to term. I doubt that my inability to carry to term is anything to do with my paraplegia. I wouldn't have not spent those years trying. For all the pain and sorrow, it was worth trying. There's always an organic reason for these things, but at this moment in time, and after a long time of hoping, I'm happy in my mind to go with.... it's just one of those things. I have a lovely life, and I'm just going to stay grateful for life I have, my furry babies included.  

anlyerla

@Emms I am so sorry to learn of your losses. I cannot even begin to fathom that heartache.

Have you been tested for MTHFR or Factor V Leiden? They're often hidden causes for recurrent miscarriages. 

Emms

@anlyerla All my testing was done twelve to ten years ago, no mutated MTHFR. Chromosomal testing didn't come up with anything either. I can't remember anything about the Factor V L. We stopped trying 5 years ago. They never found anything. My periods started becoming sparse 3 years ago, and I'm just waiting now to get to that whole year year without one. It's been 8 months now. 

anlyerla

@Emms - I cannot imagine how hard it must be to realize you may never get to experience pregnancy and birth. I know I hate it when people say there are other routes to parenthood because it stings our hearts in a way they can't possibly understand so I won't be that person. 

Emms

@anlyerla ❤️ . It's ok  I have an awful lot to be grateful for in life! x   

katiebarrington

My husband (T5 complete) and I conceived this gorgeous baby girl at home. He had never ejaculated after his accident but read a trick on another message board and gave it a try and it worked. We attempted at home “turkey baster” method for a few months until we perfected it and to our surprise, we got pregnant. 
My tips: get a sperm analysis first before you start trying. Get cheap ovulation tests on Amazon. Have him ejaculate to “clean out the pipes” a couple days before you know you’re ovulating (This is just an SCI thing, not for “normal” couples).  Have FUN! At home IUI isnt aslways the most romantic thing, but we laughed a lot so I have great memories of trying to conceive 💗

Zcollie

@katiebarrington Thank you for the idea and tips! I am a C-4 incomplete quad. My girlfriend and I are not really to start trying, but when we are we will try this method!!

vpitaluga1

We conceived our sweet Joey boy with the help of 1. ClearBlue’s Digital Advanced Ovulation Tests (a must for us, got pregnant the first month we used them!) 2. The viberect. 3. A sterile cup and syringe. Also used but optional: pre-seed and gravity. Totally agree with having sperm count checked first, we were very blessed that my husband’s is normal to high. 

BrittanyFrank

I'm a t-12 paraplegic and gave birth to my first baby 6 years after my accident in 2017. It was a relatively (because no one is the same regardless of injury) normal pregnancy and brith. I found out it was safe to continue to take baclofen while pregnant and while breast feeding, with no negative side affects and the only complication I ran into was with the epidural. Due to the scar tissue around my T11-L1 fusion the epidural wasn't working at first, but with extra time it was able to make its way through the scar tissue and still deliver natural birth.

heatherkrill

My husband has a T7-8 level complete spinal cord injury; none of our procedures were covered by insurance unfortunately living in New Hampshire.  However after several years and several thousands of dollars later, we are blessed by a now 9 year old son and an almost 8 year old daughter.  We went through the Dartmouth Hitchcock Fertility Clinic in Lebanon, NH, which, sadly, is now closed.  However, our doctors were wonderful and introduced the Ferticare Vibrator to us which allowed Geoff to ejaculate after 10 years post injury.  Then we dropped it on the floor during some home renovations and shattered the damn thing forcing us to spend $800 on a new one. Typical for us to get so excited in the moment that we break the technology.    We tried 6 rounds of in utero insemination unsuccessfully and then 2 complete rounds of in vitro insemination.  After the first round, I ended up with hyperovarian stimulation which meant all of our fertilized  eggs had to be frozen until my body calmed down.  We were lucky to have many so many eggs fertilize, which allowed us to do 4-5 cycles.  Our son was born from the very last frozen embryo in the batch.  We called them Krillsicles since they were frozen for so long.  Since this took years, we didn't want to wait too long given our ages, etc, as we were already considered "relatively ancient" by fertility science.  So, when our son was 6 months, we began the process again to jack up my ovaries, etc.  Our daughter Greta was born 10 months later.  We had 9 embryos remaining, which we donated to be adopted by other families like ours trying to create their own.  So I wouldn't wonder if those embryos ever became actual babies, I wrote a fiction book about the process.  Of course we still wonder-- what family wouldn't?  But we are so lucky to be a family of four, and just added a service dog named Emerson into the mix last year.  There were years when they were infants and toddlers when I wasn't sure we would all survive, but here we are on the other side truly enjoying childhood again.