Leo's Mom

In the past few days there have been numerous news reports about baby Leo who was born in Armenia.  It's been reported that his mother gave the father the ultimatum that it was her or the baby.  Why?  Because Leo was born with Down syndrome.  His father chose to parent Leo instead of placing him in an institution.  There have been many negative comments about his mother.  As an adoptive mother of two children with Down syndrome here is my perspective on the situation.

In Armenia and many other countries around the world when a baby is born with a disability doctors tell the parents they can send the child to an institution.  They don't need to be "burdened" in raising such a child.  In our own country this happened not so long ago.  Today many of our own doctors give a prenatal diagnosis of disability and in the same breath offer to schedule and abortion right away.  The parents shouldn't have to be "burdened" in raising such a child.  Many of the same people who are quick to demonize Leo's mom would nod their heads in silent agreement if only a few months before she had decided to have the doctor rip Leo from her womb limb by limb (for my friends who shared this story with me on FB, I absolutely know that you are not of that opinion).  They think it's only fair to allow a woman pregnant with a child with a disability be given extra time to decide to abort than is given for a typical child.  After all, who should be burdened by such a child.  In Armenia they hide their children with disabilities behind the closed doors of an institution.  We get rid of ours behind the closed doors of a doctors office.  Before we have this collective rush of judgement of Leo's mom perhaps we need to examine how WE really feel about a life lived with disability.

My prayer for Leo's mom is more a prayer for her country.  That they would see the value of people with disabilities.  That they would develop structures to support families living with disability.  That parents would be encouraged to see past the diagnosis to see their child.  Perhaps Leo's life would be a catalyst for that.

My prayer for our own country is that OB's would be willing to admit that while they have the textbook knowledge of the potential problems surrounding disability, most have little contact with the people behind the label.  That families would be encouraged to connect with other families who are parenting their children so they could see beyond the initial diagnosis.  And if they still felt unable to parent that they be made aware of the hundreds if not thousands of families willing to adopt the child.  I wish we would be as uncomfortable with an abortion rate of 60-90% for children with disabilities as we are with a scared mother living in Armenia.

Baby Girl Update

When we adopted our son internationally the children that were available for adoption had a short profile written about them.  It gave what background they had about why they were orphans and some of their medical history.  While waiting for our daughter domestically we would receive a brief description of birth mom's history and the known or expected medical issues of the child.  In both situations some the profiles for the children were long and intimidating.  The first time around some of the profiles scared us away from certain children.  By the second adoption we never got to the point of saying no to a child because of their profile description.  Instead we prayed that if God wanted us to adopt the child with the long medical list that he would prepare us and then we waited to see if we were chosen.    My hubby and I were just saying the other day that if our baby girl were waiting to be adopted now her profile is getting longer and maybe more intimidating to some.  But she's just our daughter and while the medical issues take time they aren't so intimidating now.  I'm assuming some friends and family would like a little update on our baby girl, but part of me hesitates.  I don't want her to be seen as a list of problems.  She's our beautiful daughter and no list of medical needs makes us wish she wasn't.

So here's where we are now.  She's five months old and working on rolling over.  She'll get up on her side and just hang out there for awhile.  I gave her a gentle push one day that sent her over on her belly and she started giggling.  Tickles to the toes and those chubby little thighs will also elicit a laugh.  I love baby laughs.  In the evenings she's fairly talkative and will coo and babble for quite awhile.  She also likes to coo to her big brothers and sister.  They enjoy coming and talking with her and she just watches and talks.  Nights have been quite easy with her and after having several babies that were not good sleepers, I am incredibly grateful for the gift of sleep with a baby in the house.

When I first traveled to stay with her in the NICU the doctor thought once Mommy was there she would start getting the hang of sucking from a bottle.  I hoped that she might be able to nurse as well.  A couple days after being with her she sucked on my finger for a good 15 minutes with a very strong consistent suck.  We were all very hopeful she would continue, but that was the one and only time she did.  The coordination it takes to maintain a consistent suck is just something she has not been able to get the hang of.  After returning home we were able to get in to the feeding clinic.  There we tried different bottles and exercises to help her get it figured out, but on a good day of feeding from a bottle she'd take 10-15 mL of formula in a day when she needs around 750 mL per day.  She was seen by an ENT to make sure there were no physical anomalies to prevent her from sucking and he found nothing.  It's not unusual for a child with Down syndrome to have difficulty feeding initially, but this level of difficulty for such a prolonged period is unusual.  Currently she is being fed by an NG tube which enters her nose and goes down to her stomach.  She could be fed this way for as long as she needs supplemental feeding, but as she's growing and moving she's also getting much better at pulling it out of her nose.  There's also concern that it could cause oral aversion the longer it stays in and since she's already a little sensitive to too much oral stimulation we don't want the NG tube adding to that.  So the plan is for her to have surgery in February to have a G tube placed directly into her stomach.  The doctor will go in through her belly button and place a little button-like device that will sit on the outside of her skin with a small tube going directly into the stomach.  Inside the stomach a small balloon inflates to keep it in place.  It was a cool little contraption.  Once it heals it should be difficult for her to pull out especially with a onesie on over top.  She'll be able to do everything we can do with it in and we'll be able to let her hands out of her swaddle without having to worry about it getting pulled out.  It's a much better long term solution for her feedings.  We are expecting her to have the G tube for the next couple of years, but at this point we expect that she will begin to eat on her own and will not need the G tube for life. 

I realized tonight that I am also looking forward to not having her feeding issues so visible to people. I tend to forgot about the tube because I'm so used to it, but remember how unusual it is for other people when we go out in public.  I don't mind the questions, because I know we stick out.  Our skin doesn't match, so people wonder about that.  She has a tube in her nose and taped to her cheek which you don't see every day.  It's natural that people are curious and I'm perfectly happy to answer questions, but sometimes those questions lead to pity for her and pats on the back for us.  She needs no pity.  Thanks to a simple medical intervention she is a healthy baby girl.  I am incredibly grateful for that little tube.  Then there's the stated or implied idea that we are somehow noble for "taking that on."  How do I express that we haven't "taken that on" but are simply caring for our daughter.  Parenthood has stretched us in ways we didn't image before having kids and each child has had their own unique sets of abilities and challenges.  Learning to care for a tubie baby has been stretching at times, but that's not unusual to parenthood.  I am so glad we moved from saying we could never care for a child with a feeding tube to asking God to prepare us if the child he brought needed that intervention otherwise we wouldn't have our sweet daughter.  If I could make one request of you.  When you see a person with an obvious disability please be willing to look past what you may think is a problem or burden to see the person in front of you.  That person is more like you than different from you.