Genetics

After much debate George and I decided to have a genetic test done to see if we were carrier for any diseases. It's a weird thing to be able to do because it could potentially change a lot. And sometimes ignorance is bliss. But I'm really glad we did it. It is good information for our families to have as well, especially Mackenzie and our future child/ren.

It only took 2 weeks but we got the results back last Thursday. The great news is that we are carriers of different things so there is almost no chance of having a child with any of these disease. Of course they will never say 100% chance but we will take the odds we have! 

George is a carrier of Biotinidase deficiency & Mucolipidosis IV. Biotinidase deficiency is just a vitamin deficiency that is really treatable with medication so that's good news. Mucolipidosis IV is a break down of fatty acids that causes a metabolic disorder. Although most people with this disorder can live to their 40's they never learn to walk and their mental capacity stays around age 12-18 months (per Counsyl's website). 

I am a carrier of Spinal Muscular Atrophy. This was kind of scary for me because my grandmother died of ALS before my brother and I were born so I was worried that this might mean I have the gene for ALS as well. But per the lady from Counsyl during my phone consultation there are different genes for SMA and ALS so my risk of ALS is not greater than anyone else. 

It's weird because I follow a woman on instagram whose daughter was born with SMA and that's how I first learned about it. It is such a nasty disease so when I found out that I was a carrier for it it was shocking. I am just so glad that George isn't a carrier for it as well. Of course there are no guarantees but the chances of us having a child with SMA are pretty small. But we do know that I am the queen of slim chances! 

We are also going to have the embryos tested for chromosomal abnormalities. We are just trying to get the best possible odds possible for our future transfer. 

Speaking of embryos- we don't have a date yet to do egg retrieval. I have my reconstruction surgery on November 2nd. This is the surgery I was supposed to have like 1.5 years ago but have been pushing off. So I finally scheduled it. This takes priority over egg retrieval and I want to make sure I'm recovered before we start scheduling egg retrieval. 

Truthfully I'm not really looking forward to either. But I am excited to see how many eggs we get this time and how many healthy embryos we can make. It's so interesting that some people get a ton of eggs during retrieval but then only end up with 1 or 2 good embryos or some people get like 7 eggs and almost all become good embryos. We are optimistic that this time we will get a lot more eggs and then end up with good quality embryos! 

FAQ

As we have been learning about surrogacy for the past 3 years sometimes I forget that not everyone has as much information as we have. We know a lot but are in no way experts! Especially since we haven't actually used a surrogate yet. So I thought I'd put together a list of questions that people might have or have asked us and answer them- feel free to ask any other questions you might have!

Why do you need a surrogate if you don't have cancer anymore?
This is probably the most common question we get. The biggest reason is because while it's true that I am in remission the chance of recurrence even after 3 years is still a huge possibility. I am currently taking tamoxifen which is an estrogen antagonist. Being pregnant means I would produce a lot of estrogen which is what fuels my cancer. So if I was pregnant I would have to stop the tamoxifen (which is blocking estrogen essentially) and I would be adding in a lot of estrogen in my body. While taking tamoxifen isn't a guarantee that I won't get cancer again, my doctor and I aren't comfortable risking me being off it to be pregnant. My prescription for tamoxifen is for 5-10 years and I've only been on it for 2.

Edited to add: my oncologist recently told me I need to go into menopause because new studies show that young women in menopause after cancer have less rate of recurrence. This news means that any chance of me ever being pregnant again is over.

Does the surrogate use her own eggs?
Not in our case. We are going to use a gestational surrogate which means the embryo will come from George and I and then be implanted into the surrogate. We will do another egg retrieval and then fertilize the good quality eggs we get that will then be implanted into the surrogate.

Isn't there a possibility of the surrogate carrying a lot of babies?
Technically there could be however we wouldn't want more than twins. Our plan is to implant 2 embryos and if both stick then that's great. If one sticks that's great. And if none stick then we will try again. There is of course, a chance that either or both embryo could split into 2 or 3. If there were more than 3 then we would, unfortunately, chose to selectively reduce. I know a lot of people might not agree with that and it feels like beggars can't be choosers but in this case we actually can chose. Carrying more than 2 babies just isn't safe for the surrogate or the babies nor do we feel capable for caring for that many children.

Edited to add: As we have gone along this journey we have realized that transferring more than 1 embryo only gives us a better chance of having multiples. We have changed our position on how many embryos to transfer- as of now we would only transfer one embryo unless our doctor recommends otherwise.

How do I qualify to be a surrogate?
My doctor said his ideal surrogate would be 40 or under (although he said age isn't THAT important), in good health and has given birth to healthy children. Having a child is a state law for surrogacy. I used to think the surrogate had to be married but that is not the case. However if she is married her husband obviously has to agree to his wife being a surrogate.

Edited to add: new guidelines from my doctor say a potential surrogate should be under 43, BMI under 35, no more than 2 c-sections and no more than 4 births. My doctor follows the ASRM guidelines and won't budge from these requirements.

The first steps are being medically cleared by my fertility doctor, George and I and the surrogate and her partner if she has one have to be cleared by a psychologist and our attorney will check the surrogates insurance to make sure it covers her pregnancy. Once those things go through we would go to contract which means we would both fill out the questionnaire where we agree to all of the questions and submit that to my attorney. The surrogate can either hire her own attorney (that we would pay for) or use an attorney recommended by our attorney (it can't be our attorney because of conflict of interest) and once we agree to the contract the process of the surrogate being pregnant would begin.

What is the commitment in terms of appointments and time off work?
I don't have a definite answer for this. In the beginning there will be a couple of doctors appointments and a psychologist appointment. Obviously when it gets closer to transfer time there will be more frequent appointments but it is my understanding that the surrogate won't have to necessarily go to the Shady Grove I go to to have this done. And their appointments are pretty early in the morning. And then once the surrogate is pregnant there will be a couple appointments with Shady Grove (every couple weeks) and then she will be released to her doctor who will see her as a regular pregnancy- once a month until she gets closer to the due date.

Why don't you just use an agency to find a surrogate?
We would love to do this. In fact our attorney's office matches gestational surrogates and intended parents for free. But we don't have an extra $20,000. This process cost around $35,000 without considering the payment to the surrogate. To be frank- we can pay a surrogate something but we just can't afford the going rate which is why we have been hoping that someone we know will want to be our carrier.

What would I have to pay for as the surrogate?
Nothing. George and I and your insurance would cover everything. All of the pre-screening, all of the attorney expenses, all of your co-pays and out of pocket expenses would be covered by us. This is something that our contact would cover and would also include how much we would pay the surrogate per month, per cycle if the first cycle doesn't work, if shes carrying twins, ect.

I am afraid that I will want to keep the baby once it is born if I am your surrogate. (Not a question but a legitimate concern)
I can totally understand this concern. I felt totally bonded with Mackenzie the entire time I was pregnant, from the second I saw the positive on the test. But I think that it will be different going into this knowing that in the end you won't take a baby home. Not everyone can handle that, and I totally get it. But that is also why there is a contract in place.

What kind of contact do you expect of the surrogate during pregnancy and after the birth?
During the pregnancy I expect to go to every prenatal appointment. This is one big reason we would like the surrogate to live fairly close to us. We don't need a text or email for every little movement or kick but I guess depending on who the surrogate is and how close we are with them before the process started we wouldn't mind!

Part of the contract will talk about what will happen in the hospital after the baby is born. George and I are willing to leave some of this open to the surrogate. George and I want the baby to be handed to us directly after birth. After the birth, the surrogate may not want to see the baby that much or she may want to see the baby as often as possible. We want to do whatever feels most comfortable for all of us. I'm certainly not going to rip a baby out of our surrogates arms and never let her see the baby again. The surrogate will bond with this baby while she is carrying it no matter what. So to just take the baby away without giving her a chance to come to terms with her journey ending is not fair to the surrogate. Our hope is that the hospital won't be too full and George, the baby and I will be able to have our own room and the surrogate will be able to have her own room (again at no cost to her). Otherwise, as I understand it, the only time we will be able to take the baby out of the nursery is when we take it to the surrogates room. And she might be okay with that (we are okay with that too) but I just think it could become a little burdensome to all of us.

After we all leave the hospital I guess future contact will depend on our relationship with the surrogate. Again, I know that she will bond with this baby so I imagine that we will continue contact. I guess the amount of contact will be something we will have to figure out as time goes on. I don't necessarily think that any of us should feel pressure to see each other a certain amount of times a month/year but I guess we will have to see how the whole process goes. We certainly don't want to overload the surrogate with baby information/pictures after she delivers in case she might need some space to recover from the whole process.

What say does the surrogate get in her medical care regarding the pregnancy and testing, diet, ect?
Our contact is VERY specific and all of these questions have to be agreed on and in our contract before we can proceed with any type of embryo transfer. Some of the questions- as mentioned above- talk about selective reduction and abortion. We have answered most of the questions that we would like the option to have our carrier selectively reduce or abort the baby if there are life threatening problems and this is something that our surrogate would have to agree with us on. Obviously we hope that the baby is healthy and we don't have to worry about any of that. We are getting ALL of the genetic pre-screening available (on George and I and the embryo before it is transferred)  but I guess there is always a chance something goes wrong. But ultimately our number one concern is the health of our surrogate. We would never ask her to keep carrying a pregnancy that is detrimental to her health.

In regards to while the surrogate is pregnant- these are things we will have to discuss with the surrogate and decide what we are all comfortable with. I didn't do any testing while I was pregnant with Mackenzie and I kind of expect the same for our future baby, especially since we are doing so much genetic testing all ready. In terms of diet, we just expect that the surrogate will abstain from all tobacco, illegal drugs and alcohol during the pregnancy. I think most women change their eating habits at least a little bit while their pregnant and I'm not really worried about that unless her doctor thinks there is a problem.

In terms of what doctor the surrogate will see- her own. I think its important for every woman to find a doctor that they are comfortable with so we wouldn't ask for her to change. That goes for hospital as well. We live in an area where every hospital is reputable and we know our baby would get the best care so we will deliver wherever the surrogate is comfortable.

Will you expect the surrogate to pump and provide breast milk?
Again we will leave this up to the surrogate. Some might want to do this for us and the baby but we aren't expecting it. I can imagine after giving birth the surrogate might want to be done with anything baby related and we totally understand.

Who will decide the birth plan?

Ultimately because this is our baby George and I will make medical decisions on the babies behalf. However, like I said before, our surrogates health is most important. Because the surrogate will have all ready given birth the birth plan might be set from the beginning (i.e. Must have a c-section) but as we all know not every birth is the same. We are totally open to discuss this with the surrogate as she may have specific things she wants in the room or specific way she is hoping for the birth to go. Another thing to consider is that George and I would like to be in the room for our babies birth. Again this may not be possible for whatever reason but it is something we would all have to discuss.

Why don't you just adopt/why do you need to have another child? 

We've thought about it all. We have looked into adoption extensively. But we feel like we have the resources to have a biological child so that is what we would like to do. As for the second part- believe me we have gone back and forth with this for years. Recently I went on a trip to visit my bestie Laurie in Massachusetts with Mackenzie and it was SO easy! She is at such a great age- she gets her self dressed, she plays by herself, she can get herself in and out of the car and she is SO independent! When I got home from Massachusetts I turned to George and asked- do we really want to do this? And we talked about it for a few minutes and then I just started crying. It's easy to pretend that we are handling this well emotionally but the truth is that sometimes we aren't. It's easy to not think about all of this for awhile but then when you do it really hits you. We want another child. Like today. We talk about him or her all the time and Mackenzie just started telling us that she says a prayer to herself that she will get a brother or sister. I thought about how hard it would be to tell Mackenzie that we changed our mind and that we were just going to be a family of 3. And I thought that if that's what George and I decide then that's what will happen. That's not why we want another child. But the thought of not expanding our family feels like a part is missing from our hearts. We had a lead on a potential surrogate and we got our hopes up- through no fault of any of us- but we didn't really realize it until it was over. I realized that I had been looking at car seats and all the things that go along with newborns or twins and I got really caught up in it. So I think that is why we have been kind of quiet lately. We don't want to get our hopes up again so it all feels kind of blah right now- which we hate. 

I have to say that this has been one of the hardest side effects of having cancer. It has lasted 3 years and there is no end in sight so far. We have done most of what we can do in terms of our testing so we are just waiting. When we went to our financial appointment she asked if we were ready to start right away or in August and I just thought- wow I can't believe it's going so quickly. Then when I realized it was September I got really sad because like I said before we had our hopes up and so a timeline started in our head and we planned all of it- when we would do the transfer, when/how we would tell Mackenzie/others and now there is no timeline. We know that this is A LOT. I can't say that enough. After saying all of this- we aren't giving up hope and we aren't going to give up. It's not happening in our timeline (or we'd have a 2.5 year old) but we are adjusting.