For the past two years my husband and I have been trying to conceive a child. We got married and took the approach that we would not try but just let it happen on its own. We assumed it would take awhile since we both have medical conditions (his diabetes type 1 and my MEN type 1) that may hinder fertility somewhat, but I think we also thought it would happen. We were hopeful that we could just be "normal" people when it came to having a child. We prayed that the door would open for us to conceive naturally without any problems. This door did not open.
After a year of unofficially trying, we started to officially try. We were checking calendars, testing ovulation, and trying to assist the process naturally. During this time of trying I found out that I may have endometriosis or some other obstruction. The only way to know was to schedule a laparoscopic surgery to go in and check things out with a laser ready to "zap" away the culprit preventing pregnancy.We were ready or so we thought but things changed.
A month before the procedure I had a freak accident and got my hand caught between a banister and a column as I was walking down some stairs. As I went to my knees, my hand got pinched and my right ring-finger metacarpal snapped in half. We ended up in the emergency room scheduling an appointment with an orthopedic surgeon. I had open fixation surgery where they screw the bones back together using an interlocking metal plate. I went through a terrible time dealing with pain, nerve sensations up my arm, and a doctor who basically was a jerk about it all. After six weeks of therapy, I finally got full function of my right hand but was left with a really cool "bionic" hand. The doctor wanted to leave the metal plate holding my bones together indefinitely. Why? Because apparently my little bone was miniature, like a child's, and there was some concern about my bone density. This led me down another path to the endocrinologist. The door to pregnancy is closed for the time being, and we are having to open some other doors first.
Just a brief synopsis here, I have a genetic condition passed down from my father. I found out I had Multiple Endocrine Neoplasia Type 1 or Wermer's Syndrone when I was about 16. My father and his brothers had been having problems related to MEN type 1 and my family went out to St. Louis for genetic testing. I along with two of my three brothers were positive for the MEN gene mutation. Basically there is a mutation on the 11th chromosome, the MEN1 gene, that suppresses tumor growth of the endocrine system (the three p's: parathyroid, pituitary and pancreas). Most tumors are benign, but they can become cancerous. When these hormone producing endocrine glands become overactive they can release too much hormones into the blood stream. In my case my parathyroids are over active and release too much PTH which causes my bones not to absorb calcium and thus begin to thin out. The excess calcium in my blood builds up in my kidneys can can cause stones. They can also manifest in other ways, but I have been lucky. My brother, father and uncles have had harder times resulting in major procedures I hope to never experience. Knowing that I have the syndrome allows me to use preventative care by having lab work regularly to look for elevated PTH and calcium and then have parts of my parathyroids removed before things get really bad. This system prompted a partial parathyroidectomy in 2000 when I was 16 and again in 2005 when I was 21 because my parathyroids had regenerated.
Now that I am "bionic" and can regenerate glands, my husband who is into superhero stuff thinks I'm like Wolverine. Pretty cool! Not quite. I am in the process of finding out if the MEN1 is at it again. We also are looking into lab work to see if we can conceive. I will have my progesterone tested this month to detect if I am ovulating. If not, then hormone therapy will be needed to induce ovulation. In tandem, I will be scheduling the laparoscopic procedure and saline sonogram to look for scar tissue and endometriosis that may be hindering pregnancy.
During all of my procedures, my husband will be having his diabetes monitored and lab work to see if he may be a factor we need to consider. We may be dealing with some problems with him as well.
All things considered, we know pregnancy will be difficult and costly. We worry about trying so hard and yet not be successful. We don't want to exhaust ourselves and put strain on our bodies, our finances, and our marriage. We are also very concerned about creating a child knowing we could pass medical problems to them. About 1 in 30,000 people have the MEN1 syndrome and it is autosomal dominant. If you have the gene, you will eventually have problems. If you do not have the gene, you obviously will never have the problems. The odds of passing the gene is 50/50. Flip a coin every time a child is conceived by a person with the MEN1 gene. Heads they have it, tails they don't. This is a very high risk in my opinion. The odds are neither for us or against us. His diabetes seems to me an isolated case within his family, so we do not know if it even is hereditary or if some environmental factor such as a virus triggered the disease. Either way, knowing we could pass something to our child is hard to deal with.
I remember being told I had MEN1 as a teenager as my family, the nurse, the genetic counselor sat around a conference table in a hospital in a big city. Even though I was not alone, I still felt alone. I remember seeing my father cry and not really knowing why. Now that I am an adult, I can imagine the burden of knowing you gave your child a disease and think he may have been crying for us. This has a lasting impact on an individual, and I ask myself "Is it ethical to produce a child knowing you could be passing to them a disease?"
In our world hundreds of years ago before modern medicine, a person with a disease would eventually die. They may not produce offspring, so through the process of natural selection, the mutation or disease would eventually become non-existent. Survival of the fittest. I am certainly not the fittest, so without medicine, I nor my father, or his father, and so forth would not have survived. My husband would certainly not have made it past a few days with insulin dependent diabetes. He nor I would exist. We would never have children. So should we defy nature and bring someone into being that maybe would have never existed? This is the scientist in me thinking.
On the other hand, my spiritual side thinks, God has a plan, and the miracle of life is so amazing. The fact that so many factors have to happen at a single moment in time and everything has to be exactly perfect for life to happen is so mind blowing. So many children are born that doctors insisted would be sick and were born healthy. The convergence of so many things that will result in life just cannot be taken lightly. So I think even though the fit will survive, who decides what is "fit"? If God has predestined a life, then He ultimately decides the survival of the His fittest.
We are keeping an open mind and praying. We would so love a child, but we know God has a plan and knows what He is doing. We are not opposed to adoption, and we are aware of genetic embryo screening and selection and in vitro fertilization. We are taking things one step at a time and pray that God opens doors that are meant to be open and closes doors that are meant to be closed. That He will give us wisdom, patience and strength to accept whatever door opens for us as well as those that may close.
