A few months ago, I held a contest on Instagram to search for a mother and daughter pair to model the newest Mommy and Me robes. It was nearly impossible to choose from the entries; each duo was just as adorable and deserving as the next.
One message definitely stood out from the rest, though:
"To be completely honest, I never enter any of these things and for some reason, I don’t do matching stuff with my two year old daughter. My sister in law, however, is all about this. Unfortunately she has had multiple unsuccessful attempts with IVF treatment. I’m not sure what the rules are but it may mean a lot if you accept her participation in the contest on my behalf."
I knew I had to say yes to this request! Nehal, nominated by her sister-in-law Ankita, models the newest robes with her niece and opens up about her IVF journey below. Her insight and advice is both hopeful and informative, and it's our hope that sharing this story will help erase the stigma of infertility, one voice at a time.
Nehal, the winner of the PajamaSutra Mommy and Me photoshoot contest, was nominated by her sister in law. Nehal is on a 3-year (and counting) IVF journey, and is photographed with her two-year old niece. Photo by Kristen Fitzgerald Photography
Can you share a bit about how your journey with IVF began?
My husband and I had been married for 3 years - we had done our fair share of travel and adventure. Brij had just finished dental school (for the 2nd time, first in India) and had been working steadily for about a year. We just bought a beautiful home and thought the time is right to start trying. We didn’t realize that it was going to be an uphill battle that we would be in for years to come! We tried for nearly 2 years before we decided to seek help through an IVF clinic. I had always known in the back of my mind this may be the case as I had undergone chemotherapy at the young age of 16, but didn’t want to believe it. Now, here we are 3 years into IVF. No baby yet, however we have options!
Sungita Patel, a member of PajamaSutra's Instagram community, commenting on the latest post on IVF
What was it like to make that decision to start IVF? Was it an optimistic time or was it challenging to stay positive?
At first this was hard to handle, unfortunately from an Indian mindset way - how will my family and in laws react? I can’t even do the one thing that every female is put on earth with the capability to do? Thankfully Brij was very supportive, I had told him before we got married that this was a real possibility. He accepted me no matter what and said we would figure it out if and when the time would come - and well the time sure did come! After talking through it, he helped me see the opportunity over the limitation. He said that science has advanced so much that its now an option for us to consider when maybe just 50 years ago it wouldn’t have been an option! Reminding ourselves of the options we do have instead of the physical limitations we have had really helped us move forward and focus on progress. And I would keep telling myself - one way or another, we will be parents.
What does the wait feel like in between cycles? Do you have any advice for handling the wait?
ANXIETY! One of the things that helps me cope with anxiety and stress is a good workout, but during IVF there are so many limitations with this! I find that between cycles, I try to push myself hard to get back on track until it’s time for another round. If you are in retrieval mode, you can’t workout because of the fear of your tubes twisting. And during transfer because you don’t want to increase your body temperature too much as it may negatively impact the embryo's ability to implant. So...what do you do? Well in the month-long process for retrieval, I spent a lot of time re-arranging my office and experimenting with new recipes. I find both of these things to be quite engaging and doesn’t really allow you the time to sit and think about the "what-ifs" related to IVF. The big thing to do is to remain healthy, both mentally and physically. The best way to do that is to keep your mind positive and working on things that you can feel a sense of accomplishment for. Break up a big task into mini achievable steps. Putting a check in the box or crossing something off your list of things to do can feel like you are making progress and it helps with staying positive. Also eating healthy! I found that eating healthy despite cravings for chocolate or ice cream when I am stressed actually helped me stay a bit more sane. The 2 weeks between a transfer and a pregnancy test are probably the scariest 2 weeks every time I have gone through it. It’s a black and white answer in the end, and it has been a negative for me 3 times in a row now. I spend my time hanging out with my husband, relaxing - allowing him to pamper me while I continue to get extra rest. Watch funny movies or shows. Catch up with friends to keep my mind off the inevitable test.
Photo by Kristen Fitzgerald Photography
What do you wish others understood better about what your body goes through during IVF, physically? And mentally?
It’s not a luxury, going through IVF. Despite how MANY insurances, employers or even the IRS that won’t let you expense the cost unless it is 10% or more of your income! But you were given a second chance, and you are embracing it. But that embracing it part - no one quite understands what you have agreed to sign up for. And perhaps if folks understood the physical and mental pain associated with it, not to mention the financial burden - just maybe then people would be a little more considerate in their questions and comments.
At first I used to get very upset with desi aunties who would make comments like "Beta you have been married for 5 years now- no kids? You know now is the right age - you’re not getting younger" to which I always thought in my mind "OMG thank you for enlightening me aunty! I wasn’t aware of how long I had been married or that I am getting older!" Once again to the rescue - my very positive husband! He said: look they don’t take care of you, they don’t house you, they barely do anything for you, so why does their opinion matter to you so much that you let yourself get frustrated? In the end, you are the only one losing out. And then I took a long hard look at myself (let’s be honest, I slipped a few more times) but then realized - he was right! I didn’t have to just listen to that and internalize how much that hurt to hear - like aunties all over taunting us for my flaw! I began to reply with "Well aunty there's a question - and when science and god decide to meet in the middle perhaps we will know when we are going to have kids- until that I have plenty going on that I am happy and grateful for."
How has the Indian community and family/in-laws made it easier or more difficult?
When we first really understood the challenges we were facing, and desi aunties and uncles would make comments, it hurt a lot. To the point where I began to become an introvert and avoid events - even large family gatherings! It wasn’t until the 3rd try that I finally decided to just tell people it’s not appropriate to say "Don’t you think it’s time now" - and it’s not always in our hands. I think sometimes people don’t mean it in a taunting way, and you cannot assume that or take it to heart because it really only hurts you. There is nothing good that can come from feeding into it no matter how much it angers or upsets you. But responding this way, though not always easy, may help: 'We are seeing doctors for this' (if you feel ok doing so) and 'It’s been incredibly tough, and would appreciate you wait until I approach them with news', and that you ‘appreciate their understanding of this personal matter." Maybe you won’t feel that same anger again with that person.
Photo by Kristen Fitzgerald Photography
What does self-care look like for you now that you are TTC with IVF, and how is it different from before?
When we were trying naturally, while we understood the negative impact of stress, drinking and lack of sleep we didn’t quite appreciate the impact it could really have. And while I tried to limit all of those things, I didn’t appreciate for how long and how many other things can also negatively impact our chances. Who would have thought caffeine and even chocolate would decrease the chances of conception and is not limited to pregnancy? During my most recent cycle, I realized that I kept going from one cycle to the next without letting my body relax and recover. So we decided to take a few months off from IVF, take a couple trips to get away from the day to day monotony - and really focus on us. We also stopped eating most unhealthy processed foods (as best we could), brought in much more of the fresh vegetables and fruits along with recommended antioxidants (I have them listed below, but by no means am I a doctor - these were recommended to me so I am passing it along) and increase acai intake. The results? Well just today we learned that we have a few viable embryos! The last few cycles we only got 1 each, and that’s when I realized - cutting out stress, alcohol, caffeine, adding in nutrients and antioxidants along with allowing my body to heal was the answer all along! I would suggest for anyone going into your first or your 5th cycle, take a moment to evaluate your habits. Figure out how you can show more kindness to your body, and your body will be kind to you.
What/who do you rely on for support? Do you have a community of other couples going through a similar journey?
I am fortunate to have a great support system of family and friends. But I have to be honest - it wasn’t easy telling people. It’s not exactly "hey I got a new home or a job, etc." But in retrospect, I am not sure why I was so ashamed. I was given a challenge, and we faced it head on. We weren't going around complaining or moping around - we did research and we found a possible solution! And as we shared our challenge we found that more and more people are going through the exact same battle. And so we created an 'IVF Warriors' chat with some of the ladies I met at my clinic, and also a similar group with those I had already known before. This was a great way to talk to people who actually understood what it was that I was going through. They didn’t judge when I was sad or happy about certain things. I didn’t need to go through educating them about what IVF is and what it entails every single time. I could just speak my mind and they would just get it. I would absolutely recommend finding out if your clinic offers a support group, and if they don’t I can almost guarantee there likely is one nearby. Resolve.org is a great place to start looking for events and other supporting information (supplemental links below). While family is fantastic, there is something more ‘safe’ about unfiltered discussions about IVF with others having gone through it or currently going through it. Another thing that physically helped me relax was acupuncture, I know it sounds scary with needles and all but I found it so relaxing that I would just fall asleep on the table! There are claims that acupuncture has helped with boosting fertility, so I thought I would give it a shot. While I am not sure it helped with the outcomes from an embryo standpoint, I do believe it helped relax me quite a bit- and remember stress is a big no-no.
How has being an aunt/godmother felt while being on this journey? Does it make things harder or easier?
Brij and I are blessed. We have an amazing support system in both our family and friends like family! Many of our friends know that we have been struggling and just how much we wanted this. We are legal guardians (and Godparents) to my cousin and sister in-law’s daughter (in the pictures) as well as godparents to one of my best friend's son and Brij's best friend's daughter and son. We love them like our own- and would have regardless but having that extra sense of responsibility feels closer to having our own. I don’t know that it makes it harder or easier- but it certainly helps the today and the now and they are a gift we get to influence for the rest of their lives.
Photo by Kristen Fitzgerald Photography
What has been the hardest part of this journey, both physically and emotionally?
Maybe asking the question what has been the easiest part will be easier to answer. I really am appreciative of my husband. He has been my rock throughout this journey and the reason I even felt comfortable pushing through, even when things weren't looking so hopeful. In terms of hard - well there is a LOT. But I guess the thought of having a child on the other end of this makes the fight worth fighting. By no means has any of this been easy, and sometimes while Brij is supportive you just want to scream and say you don’t get it! I have to inject myself multiple times a day, take hormone changing medication, take supplements by the handful, give up any guilty pleasure eating for comfort, give up coffee, chocolate, wine and even working out! As if that isn't enough- I have to be the one that gains about 20 pounds and is taunted by Indian aunties about my weight and if there is 'good news.' Not to mention the daily ultrasounds with the inserted probes and blood being taken to test out progress. And then the heartache of getting through all of that- only to retrieve 1 viable embryo, deciding to do the transfer and waiting 2 hard weeks to find out if you are pregnant- only to find out you aren't. None of it is easy- but then again easy is not why I started on this journey- no pain no gain right?
What advice do you have for other couples who are just starting on their IVF journey?
It is not easy, so if you really want a child with your genetic composition then get mentally and emotionally ready for ups and downs, but always try to remember why you began this journey and stick with it. The silver lining is you also get to skip a higher chance of miscarriage, or a genetically abnormal embryo implanting. Science allows you to have many tests needed to give you the best shot at having a healthy baby. So many of my friends that have been going through IVF have been pleasantly surprised. Including one over 40 who ended up with twins!
Sometimes well-meaning family or friends say the wrong things to someone going through a stressful and complicated experience like IVF - what are the Do’s and Don’ts? So for example, if you hear something often that is well-meaning but hurtful or insensitive, what should that person say instead?
This one is hard, what works for one person may not for the next. The main point however is, if the person is 'of age' in your mind, and been married 'long enough' and there is no sign of a pregnancy, take a step back and recognize that it could simply be a personal choice OR it could be a much more private matter that they are dealing with. Even when couples or individuals talk to you about it, simply asking is there anything I can do to help you get through this goes a long way compared to 'oh yea, the clock is ticking- you probably need to get on that.'
The light through the storm- I just received some good news from my last retrieval and that we have a few viable embryos that are pretty decent in ratings. Each embryo is rated based on the cellular composition, the day at which it hit the right stage (blastocyst) and the overall quality. This then ties back to stats that give you an idea of how likely each one is to implant. I began my last cycle in February, with a full month of priming. This was followed by stimulation medication which happened to be the week that the country was more or less going into lock down mode. Did I mention that my clinic is in Denver and I am in Boston? Well that certainly threw a wrench into it, but fortunately we were able to head over a few days earlier, and despite a lock down our clinic was OK with finalizing the current in cycle patients for retrievals. While Brij wasn’t allowed to join me for my ultrasounds to measure progress, we still made it work and we are grateful for the clinic's willingness and the doctors and nurses that made it happen.
Photo by Kristen Fitzgerald Photography
Has the plan changed since the pandemic? Any changes to the process?
Yes - it's a scary time all around! We were in the middle of stimulation when our state put in stay at home orders if you are non essential and suggested to avoid non essential travel. The challenge with this was that once you stimulate (which I had) you begin to grow several eggs which puts pressure and adds weight to your ovaries. Those ovaries are connected to a very thin spaghetti like fallopian tube which are at risk of twisting and this would be a pretty dangerous situation among other risks of being overstimulated etc. So naturally, knowing all of this - and having injected so many hormones - I was an emotional wreck and stressed. While we continued to go to the CCRM Boston location for monitoring, there was still a lot unknown. They had decided to stop all new cycles, and were making patients sign documents warning against the unknown if they decided to proceed with a transfer that results in pregnancy. As a result many women decided to pause on transfers. Side Note - a friend at CCRM decided to go through with a transfer, and is now pregnant with twins at an age where the odds are low! She was one of the last transfers they have done since this pandemic has cancelled all further transfers.
Back to the direct impact to Brij and I - well, the doctors assured us that we would be able to do the retrieval and not to worry. Once they confirmed this, we decided to head to Denver a few days earlier as we were worried about travel bans and limited flights etc. Everything about IVF is meticulously planned and monitored, so every day and even hour counts and we didn't want to risk anything. We arrived in Denver 4 hours after the governor of CO had shut down the state for non-essential work and travel. What an eerie and unsettling feeling that was to arrive in ghost town! Regardless, we felt a sense of relief now that we had arrived and the clinic was still setting up appointments to see us.
In the midst of all of this, we received a call from the surrogacy agency we began working with. What was supposed to be great news - a perfect match - all seemed daunting and irresponsible all of a sudden. We had been waiting for this for a long time, we had been living in this unknown non-stop trial mode of getting pregnant for many years and the light at the end of the tunnel was so near, yet thanks to Covid-19 - so far.
We took a hard look at the situation - I am much more of a risk taker in general and Brij is much more conservative, especially with finances. However this time, Brij had just shut down his dental practice and furloughed his entire staff of 20+ and I was at an early stage startup drying up for cash. It crushed our hearts that this matched surrogate was everything we wanted and even had gone through 2 surrogacies WITH OUR CLINIC! But we had to do the responsible thing, this money that we had set aside for either adoption or surrogacy was now going to be our rainy day fund. And while I can certainly sit here and wish things were different, I cant help but see the silver lining. Brij hasn't worked in over a month, and I was just laid off as I had feared. Had we signed on with the matched surrogate, we wouldn't have access to much of that rainy day fund. While it stinks that we were almost at the end of the tunnel, it feels like the right decision was ultimately made as devastating as it was.
On the bright side, this past retrieval cycle has been the best I have ever had, by far! So we are hopeful to pick this back up when the world gets back to some form of normal and the health concern is eliminated or limited.
Advice to anyone impacted by this: remember you don't just want to get pregnant, you of course want the best for your child, and if Covid-19 poses a threat - perhaps it's not the worst decision to be on hold, if you can.
You mentioned going through chemo at age 16 - that’s such a tender age to have to go through something so intense and life-altering. How has that experience changed you, aside from that “back of your mind” feeling about fertility? Do you feel like going though such a tough experience has helped you weather your fertility journey?
I think going through such a trauma at a young age, and having to live life in a very different way than most of your friends and people your age is of course going to have a profound effect on how you look at the world and challenges. But I guess everyone goes through something or another that is a life changing moment or period of time. While it certainly changed my outlook on life and gave me the will power to fight through what I thought was literally anything - I am not sure anything really prepares you for the roller coaster that is IVF. Jumping into this, I certainly thought "Well if I made it through these other life threatening situations, this is about bringing new life - of course I can handle it." The reality is that the emotional pain, the financial burden, the physical pain with needles, the hormonal change, the change in your body and the change in your way of life to give you the best shot is all so much more than most people can imagine when thinking about IVF.
I have to say, if I didn't have friends going through this to talk to, or the support group at CCRM or my husband and parents being supportive, I am not sure how I would have survived. I think it's so important to set yourself up with a support system, even if you don't think you need it. Because when you do, it hits hard.
Receiving calls from nurses telling me after 2 weeks of thinking and acting like I was pregnant- only to hear I wasn't was a heartbreak I cant even describe. I am tearing up thinking about it now! It's surprising how many people in your circle you may find are dealing with the very same challenge and yet because it feels taboo- have kept it under the radar. The stigma attached to infertility really needs to end- especially in the Indian community, its not a choice just like any other medical condition isn't a choice- but figuring out a way to become parents IS a choice. So embrace it, don't feel ashamed and if someone tries to bring you down- recognize that they are likely ignorant and uneducated- give them a chance if you have the patience else just let it be and focus on your goal- because no one else will do it for you.
Final thoughts: and no, this is not sponsored. Knowing that you need an alternative to natural conception is one thing, but understanding the nuances is a whole different challenge - and no one really educates you on this right away. Having gone to 3 different facilities for IVF, I will say I am a huge fan of how CCRM Colorado handled 'IVF Orientation.' It was a full day orientation with a schedule to meet with everyone from someone to educate us on what IVF is and how it works, to reviewing my doctor's stats, to the finances we should prepare for, genetic counseling, meeting our own dedicated nurse that will help us through. This was all along with our checkups and tests of course. Despite it being a long day, I felt more educated in that one day than I had at my previous 2 clinics combined! Believe it or not, the standard of care, despite being in the US, across of these facilities varies incredibly! If your clinic doesn’t offer this level of education up front, here are the topics we covered and you can ask about:
- What will be tested as part of the workup?
- What are dietary changes both the female and male should prepare to make?
- How do genetics play a role and what types of testing is available for both the intended parents as well as the embryos
- What are the types of medications I will need to be on for retrieval and transfer?
- How will this affect my body?
- How much will this all cost me for the procedures and medications?
- What is covered by insurance?
- What is the technology you use that differs from other clinics? (Yes believe it or not there are some old techniques and some cutting edge ones- and not everyone will be the same. For example- CCRM is known for their lab to have the distinct ability to take relatively immature eggs and give them a chance to mature enough to fertilize)
- What are the success rates for my doctor?
- Who will support me as a consistent person through all of this that I can call if I have questions? (After all there is a human element to this- and we want to build a relationship of trust and respect with someone vouching for you at the clinic- which is typically a nurse)
- Check with your insurance if there is a specialty pharmacy in network- going to your regular CVS won’t cut it
Our babies are currently frozen- but we WILL be parents! We have faith!
List of resources for couples on their own journey with IVF:
Beat Infertility – www.beatinfertility.co
Creating a Family – www.creatingafamily.org
IVFML: A Huffpost Podcast – www.acast.com/IVFML
Matt and Doree’s Eggcellent Adventure – www.eggcellentadventure.com
Modern Babies – www.acast.com/modernbabies
The Fertile Nest – www.thefertilenest.com
The Fertility Friday Podcast – www.fertilityfriday.com
The Fertility Podcast – www.thefertilitypodcast.com
Waiting for Babies – www.waitingforbabies.com
Your Fertility Hub – www.yourfertilityhub/podcast
Websites
American Society for Reproductive Medicine – www.asrm.org
Books for Donor Kids - www.booksfordonorkids.com
Circle + Bloom - www.circlebloom.com (With a meditation program)
Creating a Family – www.creatingafamily.org
Donor Sibling Registry – www.donorsiblingregistry.com
Fertility Smarts – www.fertilitysmarts.com
Parents Via Egg Donation - www.parentsviaeggdonation.com (or PVED.com)
RESOLVE – www.resolve.org
Smart Fertility Choices – www.smartfertilitychoices.com
The Center for Family Building – www.familybuilding.net
We are Donor Conceived - www.wearedonorconceived.com – Helpful resources tab.
(editor's note: always consult your doctor before taking any supplement for fertility)
Antioxidents I took:
- Myo Inositol - 2 Grams 2x a day
- Co- Enzyme Q10 - 400mg 2x a day
- L-Argenine- 1,000mg 2x aday
- DHA (Omega 3 fatty acids)- 1,000mg 1x a day
- Vitamin E- 400iu 1x a day
- Vitamin C- 500mg 1x a day
- Melatonin- 3mg 1x at bedtime (If you are on thyroid meds- please do not take this one)
- Acai shakes (some trails have proven acai helps with egg quality)
Reasons I took these supplements - learnings from my doctor:
Myo Inositol - Vitamin B component of cell membrane, increase fertility, decrease weight, increase HDL cholesterol (good cholesterol), improve triglycerides, improve polycystic ovarian syndrome through decreasing insulin resistance and hyperandrogenism
Co- Enzyme Q10 - Antioxidant that may improve egg quality and improve chromosomal division during fertilization
L-Argenine- An amino acid which helps with cell division, immune function, and release of hormones. Shown to increase fertility in women who had previously failed in-vitro fertilization- IVF procedures.
DHA (Omega 3 fatty acids)- May help with the health of the reproductive system, insulin levels, heart and brain. EFA (essential fatty acids) can reduce inflammation throughout body (a possible cause of PCOS and other types of infertility) and promote overall health. Best source if purified fish oil (COD Liver Oil is too high in vitamin A & D and can be toxic)
Vitamin E- Fat-soluble antioxidant that helps to prevent propagation of free radicals and prevents cell membrane damage.
Vitamin C- Highly effective antioxidant that acts as a natural antihistamine and prevents antihistamine release. It helps to combat free radicals.
Melatonin- A powerful antioxidant that helps to regulate the sleep/wake cycles (circadian rhythm)
Acai shakes- some trials have proven acai helps with egg quality
A very special thank you to Nehal for sharing her story; I know this post will definitely help couples embarking on their own journey with IVF.
A very special thank you to Nehal's sister-in-law Ankita for nominating her, and for helping to plan this special photo shoot for her daughter and sister-in-law.
Really nice writing ,Enjoy life everyday without stress,in life more important husband and wife living happily, rest of God will plan, trust in God.