In the last month there have been several times where the topic of another child has come up with someone. Travis and I have had this discussion many times and each time we come to the same conclusion - it's unlikely we will have another child. Until genetic testing is completed on Nager Syndrome, worst case scenario is that we have a 25% chance of having another child with the syndrome. Best case is that it was a genetic mutation and it will never happen again. As much as we would like to believe in the best case scenario, it is more likely that we fall into the worst case scenario. Miller Syndrome is very similar to Nager Syndrome and last year around this time they determined it was a recessive gene. Peyton's blood sample is one of several of children with Nager they are currently testing and we are expecting to hear at any moment that Nager will also be considered recessive.On the Nager spectrum we have been told that Peyton is "moderate". Many children who are severe do not survive pregnancy or die shortly after birth due to airway issues. Neither Travis or I can even contemplate losing a baby.
If we were to have a "normal" baby the reality is that Peyton will always take more time and energy. We don't feel it is fair to either her or the other child to put them in that position.
There are other considerations as well, though. I have pretty good insurance through my employer but it has a lifetime maximum of $2 million. Peyton is 3 years old and has already met $1 million. Almost 1/2 of that was just from her time in the NICU but with all of the surgeries in her future she is going to meet that lifetime maximum with my insurance before long. In the end, she will be uninsurable for commercial plans and we will rely soley on Medicaid for her medical care.
When explaining our reasons to not have another child we have been called "responsible" or "good parents". So do I consider people who have a known risk of having a child with disabilities who get pregnant - irresponsible or bad parents? Peyton will be faced with the decision as an adult if she will have children of her own - her risk will be 50/50. Would I deny her that choice because should she have a child with Nager as well that would be a financial drain on the health care industry, school district and herself? How much money, time and resources are too much to spend on a child - or anyone for that matter?
We have discussed adopting - possibly a child with special needs. We have also considered adopting a child with Nager but with the syndrome being so rare it is unlikely that opportunity will ever present itself. Our truth is that we have had to make a decision that we could live with. Hopefully at some point Peyton will read all of these blog entries since I print them into a book every six months. When she does I want her to know that the decision we have made is no reflection on our love for her. She is worth every tear, every cent, every moment that we devote to her.
Hi There,
ReplyDeleteI just wanted to let you know that if Nager Syndrome does turn out to be recessive, Peyton's chances of passing it on to her own children are pretty much NIL. She'd have to marry someone who also carried the gene for Nager syndrome in order to pass it on, even though she is affected. However, if it turns out to be a dominant mutation, her chances would be 50%.
I also want to share that we went on to have another child after our oldest was born with Nager Syndrome. We spent a few years pondering this decision, and in the end we took a huge leap of faith. In our case, getting pregnant was a journey in and of itself, so we knew we had an uphill battle no matter what. Thankfully, our youngest was unaffected. Our case is somewhat different then your's, in that our son has a "mild" case of Nager syndrome, and didn't require a trach or any jaw surgeries. I think if this was the case, we too would have chosen not to have more children.
Hopefully we'll get some news re the Nager study soon!!