As my husband finished his eggs and bacon, he put down his fork, looked up at me with his big brown eyes and asked the most profound question, “Now, what do we do?” I smirked out loud at the irony of his most thought provoking question. There were so many ways I could have answered. You see, his question could have meant, “We just found out our little girl may not live to see her first birthday. How are we supposed to cope? But that wasn’t what he meant. He could have been asking, “We’re going to have a child who may never eat or use the bathroom, even though her big brother and most other kids do. What are we supposed to do with that? He didn’t mean that either though. His question could have meant, “Should you resign from the job you love to care for her or should I give up the business I’ve worked so hard to make successful?” But I knew, at that point, he wasn’t asking me about the future of our jobs.He even could have been asking me, “Should we sell the house we dreamed of, just purchased, and haven’t even moved into yet?” I knew my sweet husband didn’t mean “what do we do with the house.” The irony in his question was that I knew what he really meant was very simply, “I just took my last bite of scrambled eggs, what comes next?” Because you see, in these moments, when you’ve just received the kind of news that takes your breath away and knocks you flat on your face, the big, life changing questions about death, and sickness, and jobs, and finances that swirl around your head, the tears, the hopelessness, all of that drowns out the simple, mundane daily activities of life. Suddenly, you can’t think straight and even the most basic tasks become blurred and confusing. Cleaning off the table, getting our son out of his high chair, doing the dishes, going for a morning walk, all of the “normal” things we’d usually do together on a Saturday morning, don’t really occur to you the day after you find out your daughter has been diagnosed with an extremely rare, complex, and life threatening digestive disease.
The world just stops.
No, YOUR world stops, even though everyone else’s keeps moving around you.
Let me back up.
At 27 weeks, I had an ultrasound in Pittsburgh where the doctor never came in to see me afterwards. I was a little annoyed he didn’t come in considering the seriousness of the situation and my anxiety level, but he told the ultrasound tech to tell me there was “no significant change” (and there wasn’t), and that he’d see me back in 2 weeks. I took that to mean things were going okay, and to just keep on keeping on. Our daughter had been diagnosed with lower urinary tract obstruction (LUTO) early in my 2nd trimester which is a serious, possibly even life threatening birth defect in which her urinary tract is obstructed, not allowing her bladder to empty correctly. Though LUTO is serious, it’s treatable and fixable. It can be corrected with surgery and children often go on to lead completely normal lives. LUTO was a dream diagnosis compared to what we found out two weeks later at my 29 week ultrasound. I would give anything for my daughter to have LUTO.
It turns out that by there being “no significant change,” the doctor had some red flags that things weren’t progressing as they normally do with LUTO. I won’t go into the details of all three of his red flags, but one that still really bothered him was the fact that this was a little girl and LUTO is almost non-existent in females. He had no idea what was going on, but he began doing a lot of research and consulting with other doctors. They came up with a possible diagnosis and (unbeknownst to us), met with the ultrasound tech prior to scanning me and prepped her to look for a few specific things to confirm or disprove what they thought our baby girl had. Sure enough, everything she looked for and saw confirmed what he had never seen before, but read about in the research. When he presented her new diagnosis, he told us that everything he was saying came straight from text book or medical journal. Even as the head of maternal fetal medicine (MFM) at a prominent Pittsburgh hospital, he had never seen it before. Furthermore, he met with other MFM and NICU specialists at the hospital to discuss this “mystery baby” and in all of their years of experience at various hospitals around the country, NONE of them had ever seen what our daughter has (or what they think she has). I would go on to do my own research and find that her diagnosis carries odds of one in a couple hundred million, and that there are currently less than 300 confirmed cases in the world…ever. No wonder he’d never seen it before.
What does that mean?
I’m not going to share the name of our daughter’s diagnosis at this point, but here are the basics of what we were told:
They believe she has an extremely rare digestive disease that potentially affects multiple organs in her digestive tract.
She can not eat because she can’t digest food. She will have to be “fed” by IV through a central line.
The only thing that has truly corrected the problem in other children is a multi organ (sometimes up to 7 or 8 different organs) transplant. Basically she needs a new digestive system. But of course, surgery of that magnitude carries with it a whole new set of risks and complications. The doctor described it as trading one disease for another with transplant.
We were told that survival rates for the disease are low and long term prognosis is very grim. However, in recent years, they have come to understand the disease much better and there have been many improvements with treatment. With medical advances, they are now able to “manage” the disease and prognosis is improving, drastically from even 5-10 years ago. Basically our doctor said, “Be thankful you are having this baby in 2016 instead of 2010…and in Pittsburgh.”
We are looking at a 2-6 month initial inpatient stay at Children’s. Our Dr. said 2 months if everything goes perfectly according to plan, and 6 months if everything goes awry, and more likely, it will be somewhere in between that range.
If she is going to have this terrible disease, Pittsburgh is a good place, a VERY good place to be for our daughter. Children with her diagnosis have traveled to Pittsburgh from all over the world for treatment and for organ transplant.
Apart from not being able to eat and digest food, she is a completely “normal” child. I know that sounds odd as she isn’t really normal at all. What I mean is that if they can stabilize her and keep her out of the hospital with infection from her IV, she can run, jump, play with baby dolls, go to school, develop and learn as any other child her age can for as long as her organs will tolerate it. There are no brain or developmental problems associated with the disease. It is strictly in her gut. These precious babies look and act normal and you may never know anything was wrong with them… if you didn’t know. She simply, but very un-simply, can’t eat and digest food.
The doctors could be wrong. Our daughter isn’t even here yet. They were wrong before. God could do a miracle and heal her. It’s not like He has never done that before. While these are the facts of where we are at this point, we are cautious of assuming this is all a done deal. With that said, however, I’ve seen the ultrasounds. I’ve done my research. She fits the description.I believe the doctors are correct in their diagnosis at this point, though I so desperately wish there were some mistake.
So now what do we do?
Needless to say, we are devastated, scared, and overwhelmed. We know that life as we know it is about to change drastically. The pain we feel now may be only a fraction of the pain that could be coming. Or maybe, joy and triumph are coming? Maybe they are wrong? Maybe God will heal her? Who knows? After reading my past blog posts, a woman whom I deeply respect reached out to me who had recently lost her amazing daughter. We have been talking some and upon learning our daughter’s new diagnosis, one of the things I asked her was how she went on, doing the mundane, (though necessary) day to day tasks, when she first learned her daughter’s diagnosis. I told her about all of the major life questions swirling around in my head, wondering what we will do, what our lives will look like from here forward, how we will care for our two year old son, pay our bills, etc. etc. etc. She told me that the Lord lead her to the passage commonly known as “The Lord’s Prayer” and specifically the phrase, “Give us this day, our daily bread.”
One. day. at. a. time.
She said she would just pray for strength for each day, rather than looking at the big overwhelming picture of how this was going to work. I don’t think Joey and I are there yet. We are still stuck in the one minute at a time, one activity at a time. First, get out of bed, then, get Jonah out of bed. Get shower. Get dressed. Make breakfast. Brush teeth, and so on throughout the day. Sometimes I think we need a daily “to do” checklist on the wall answering my husband’s most profound question, “Now, what do we do?” Our worlds are still kind of foggy at this point. We will continue moving one minute, one decision at at time, and maybe eventually, we will progress to taking one day at at time.
I wish I had some great ending to this post, but I believe, perhaps, our story is only just beginning…
Please pray for us.
All our love,
(Note: I wrote this post about 5 weeks ago, only a few days after we were told of our daughter’s diagnosis. We have since spoken with families from various parts of the country with children living and doing well with this disease. We also had a consult with the director of Gastroenterology at Children’s who was phenomenal. We have learned so much and have been given much more hope regarding prognosis, though it will be a long and difficult road, as she will likely have many health needs. More about that to come).