Jeremy and I would like to share something that we have been keeping very close to our hearts.
As many of you now know, Jeremy and I are recessive carries of a gene mutation that we passed down to Lincoln, which caused his Leigh’s Disease. As carriers, any future children Jeremy and I conceive would have a 25% chance of ending up just like Lincoln; having a short, and probably quite painful, life. After burying our son, I can tell you that for us, 25% is way too scary to even consider getting pregnant naturally again. We simply cannot fathom having to bury another child.
When we had our genetic counseling session at Riley, they explained to us that we could be candidates for IVF (in-vetro fertilization) with PGD (pre-implantation genetic diagnosis) since we are both recessive carriers, and gave us the names of some fertility doctors that had been able to help some other parents in similar situations as ours. We looked up IVF with PGD online and were disheartened to learn that what we were looking at would probably be in the ballpark of $26,000(!!!). So we pretty much dropped the discussion and now here we are a year later, and so badly wanting to continue our family.
Jeremy and I began to pray. A lot. For guidance and funds and basically God to work a miracle in our lives.
I began looking for a doctor to set up a consult with so that Jer and I could know for sure what we were going to need to save up, if we indeed decided to go with IVF PGD. I stumbled across the website of a doctor located in Indy that has had lots of experience dealing with couples in our situation and even he and his wife had to have IVF to conceive their son. I was really drawn to his site, and was feeling stirrings in my heart that we needed contact him. So I gathered up all my courage, and called the office and made an appointment. I have to tell you I was so nervous when I called I thought I was going to throw up! We have been through so much disappointment in our lives, it was so scary knowing we might be setting ourselves up for more of the same.
On March 18th we had our appointment… and I have to tell you that after talking to the doctor (who I will refer to as Dr. D) for just a few second I knew that we were exactly where God was leading us to. I talked about it with Jeremy afterwards and he felt the exact same way. Dr D was so kind and compassionate while he spoke with us, and I showed him a picture of Lincoln (cause I am a proud momma!) and he thought Lincoln was just awesome 🙂
We were also thrilled to find out that since Dr. D has his own private practice, he gets to charge whatever he wants, and we are looking at a total of $12,000 to $15,000, instead of the $26,000 or more we were originally anticipating. (Cue happy dance!) After lots and lots more praying, and counsel from godly family and friends, we have decided that we are going to go through with the IVF PGD with Dr. D.
Dr. D is very passionate about his work, and has assured us that he lets no embryos be destroyed during this process. Everything will be used and have a purpose, even the ones that are affected by Leigh’s Disease may be donated to research specifically for Leigh’s Disease. If we have any left over embryos we also have the option of donating them to a couple who is infertile. Jeremy and I both believe that an embryo of 100 cells in a petri dish is a potential of life, but without being connected to a mother’s womb, growing and thriving, it will never become a baby. Dr. D said it best, “life begins at conception, I can’t say that it doesn’t after years of this being my life’s work, but I’ve learned that not all life has the same purpose or is meant to live. Many “affected” embryos would miscarry if implanted, so early in fact, that you would never even know you were pregnant. It is these embryos, that I cannot with a clear conscious connect to a mother.”
For more info on IVF PGD, please feel free to watch the video below-
Because of lots of questions we have already been asked by the few family and friends who know about our decision, I would just like to address a few topics-
Adoption-Yes, we have considered it. Strongly considered it actually, and would like to someday go down that path, but we do not feel God leading us there at this time. Jer and I feel that adoption is a calling; taking and caring for someone else’s child as if it were your own is not something to rush into. There are so many other things to be considered, such as- who are the parents? What is their health? Will they want contact with the child in the future? These are just things that we cannot handle at this time. Especially with what we have been through as far as our own family genetic problems. Atleast we now know what we can expect with our own descendants; a child whom we would have no idea of what their family genetics or health is, is just more than we can fathom taking on anytime soon.
I know what it is to carry my own child, give birth, and to see that sweet, beautiful mix of me and the man I love looking back at his mommy. I don’t consider it to be selfish that I want to experience that feeling again. Lincoln was the most amazing thing to ever happen to Jer and I, and no one can fault us for wanting to have more of our own children.
Beliefs-I know that some have missed views about IVF and PGD especially. Please consider what it is like to walk in our shoes everyday. To keep on living while our son is dead because of a disease we passed to him… everyday. To know that at anytime if I accidentally conceive, I may have to bury another child… these are the things we live with… everyday. I would ask that you please respect our decision.
We continue to share our story in such an intimate way because we want to bring honor to God for His hand in everything we have been through this last year and a half… for never leaving us or forsaking us in our pain and sorrow. We are so thankful for the amazing minds He created that have invented the science to make a healthy family a possibility for us. We are excited to continue the legacy of our son Lincoln, who changed the world forever in the 5 months we was here with us, through his foundation, Lincoln’s Hope.
So on we forge down the path that God has called us to… and with the urging of family and friends we have begun a fundraising paige that will hopefully help us down our path to a healthy family without going into serious debt. We don’t want anyone to feel obligated or pressured to donate, but we have been asked about it by enough people that we have decided to proceed with a fund raising page on indiegogo. If you would like to check out our page or make a donation, please click the link below-
Please continue to keep us in your prayers while we lean on Him with everything we have.