To Travel or Stay Local for Medical Care? Guest post by Sarah Fischer

The "Medical Momma Toolkit" continues with a guest post from one of my medical mentor momma friends, Sarah Fischer.   I connected with Sarah in October of 2013, one month before travelling to China for our last adoption trip.  I was brimming with fear, preparing to take on the role of medical momma.  She and I connected, and despite being a busy mother of five, she took the time to answer my endless panicky questions.    Though we were strangers living hundreds of miles apart, she even mailed us sample medical supplies.  She has  followed that act of kindness up with a year of continuous encouragement and answers to questions.  This lady loves and serves big, and I'm forever grateful for her friendship.   She's a gift. 

 

You can get to know Sarah and her family on her blog. 

 

I'm so grateful for Sarah's willingness to recount the miracle packed story of her daughter, Hannah.  Also for the wisdom she brings to our toolkit series by sharing some things to consider when making the decision to travel or stay local for your child's medical care. 

 

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I have often said that I went into my second adoption somewhat naïve. I knew, big picture, what was going on with my daughter, but I had no idea just how complex she truly was until we got home.

 

Hannah was born with an anorectal malformation, and although we can never be sure what her specific malformation was, it was believed to be a recto-vistibular fistula, but labeled as a recto-vaginal fistula. She was operated on 5 times in China to correct this defect, and to also do some work on her kidneys. The fistula was successfully repaired in China and part of her right kidney, and appendix, were also taken in China.

 

She came home in April of 2013 with a colostomy (only because we requested it NOT be reversed in China) and a very sick kidney on the left side... that much we knew. Her belly also came with battle scars that held many secrets we will never really know or understand. We thought we would reverse the colostomy, figure out what was up with the kidney, and move on with life.

The day I met Hannah in China.

 

We live in Louisville, just 1.5 hours from the colorectal gurus of the world- Cincinnati Children's hospital. I knew enough to start here. Once we got home, I started making phone calls to get in the door at Cincinnati. I never imagined it would be so difficult!  "We really like adopted children to be home for a few months so we can see how they grow with proper nutrition." What?!? This was the first time I thought about staying local. I thought to myself, "it would be so much easier to get in the door with a doctor here and arrange a surgery."

 

The folks at Cincinnati did put me in touch with a nurse, and I emailed her the medical file we were given from China. I had 2 phone interviews, one with a urology nurse and one with a colorectal nurse. They agreed to discuss Hannah at their next round table meeting. Although the steps in the process were somewhat frustrating for me, I now have a greater appreciation for the collaborative focus, and experience, of a clinic like the one in Cincinnati. If I had stayed local, I would have been running from specialist to specialist- both with a narrow, focused view of their specialty area, and no one with a true understanding of the complexity of my child.

 

What I have now learned, is that kids with anorectal malformations are different. Their anatomies are different, their urological systems are different, and how you treat each issue, and each child, is different. Only a clinic that specializes in children with these unique bodies can fully understand that. There is no text book answer.

 

Although our initial contact to Cincinnati was the colorectal center, it was actually the urology side that got us in the door. We learned that there was a doctor there, Dr. Alam, who specializes in urology issues in children with anorectal malformations. He had seen it all, and his expertise is unmatched by any doctor in the country. Dr. Alam saw her file, asked us to get an ultrasound of her kidney locally and send him the disk. He had us in his office to get testing the next week.

 

The next month led to a whirlwind of information and often left me on my knees crying. What have we done? What type of quality of life will my child have? Is she even going to make it through all of this? The nurses and doctors at Cincinnati helped us digest the information, got us on a care plan, and provided support as we navigated this new world.

 

It turns out the colorectal side was not the real issue, and the repair on her fistula in China was done well. Hannah had a non-functioning left kidney, that was swollen and creating a giant risk for infection. She had crazy high blood pressure from the damage to her kidneys. On top of all of this, Hannah only had 1/2 a right kidney remaining, and it wasn't without defect. Now that all of the pieces were coming together, Cincinnati was still conservative before approaching surgery. They wanted Hannah stable with her new care plan, and they wanted to see what her body would do. 

 

In the midst of all of this waiting, I became impatient many times. I even doubted my decision to hold on surgery in China. They were willing to fix it there, but because of me, they didn't, and Hannah was suffering here because of it. I did reach out to local urologists and pediatric surgeons, who I only communicated with through email.

 

My first question- "How many patients have you seen with an anorectal malformation that have this type of urological defect?" His answer: 20. 20 patients. With the information I had from all of the testing, the education I had received through the nursing staff at Cincinnati, and my own research through support groups, I just couldn't do it. I didn't feel confident enough that he really understood the complexity of my child.

 

The day of surgery finally rolled around, and when I sat in the operating room for 8 hours, I felt peace. I had 2 of the greatest surgeons in the country operating on my daughter. Hannah had her colostomy reversed, and her left kidney removed, but it wasn't without complication.  There were some surprises in the OR that day, and I am so grateful for the experience and skill of the surgeons that were in there.

 

This was also the time my respect and love for Dr. Alam grew to new levels. His part of the surgery was to remove her left kidney, which would have been about 2 hours of the day. He stayed the whole time and they worked together to provide the safest scenario for Hannah. Not to mention, that at this time Dr. Alam had announced he was leaving Cincinnati and starting a clinic in NYC at Morgan Stanley Children's hospital. He was lightening his load as he prepared to transition, but he arranged his schedule so that he could be with Hannah that day. 

 

 

Hannah had just gotten out of surgery.

 

 

After hearing what went down in the OR that day, my thoughts went back to "what IF I had stayed local? And even worse, "what IF they had reversed her colostomy in China." The answer to the second question was easy, she would've died. After the surgery, Dr. Alam said to me, "whatever guilt you have about asking them to wait on that surgery in China needs to be left in this room. You saved her life." So, what if we had stayed local? I don't know. Would her body be in the best-case condition it is now? I don't know. When they opened her up and saw that her bowels were twisted 180 degrees, and her ureter was tied off with a silk thread knot, would they have known what to do, with the same amount of confidence? I don't know.

 

 

So, when you have a complex medical child, how do you decide whether to travel to "the best of the best" or stay local? Every complex medical condition will have the best- someone who knows that condition inside and out, and even in a pinch, will have the experience and confidence about what to do. For us, it is Dr. Alam. Now that Hannah's anorectal malformation is repaired (her plumbing is hooked up, as we lovingly say...) it is a non-issue for us. But the urology side is still very real, and very scary. And urology issues in kids with anorectal malformations look very different than in kids who do not have this malformation. 

 

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Here are some things to consider as you make the decision to travel or stay local for your child:

1. Does the place I am considering have a collaborative approach to care? 

I can't stress enough how important this is. You need a team. A medically complex child is not cut and dry, with one specialist calling all the shots. Don't get me wrong, you need someone to drive the ship, but you need a team that understands how the parts work together to make the whole. 

2. Ask questions! Are the doctors experienced in the specific need of my child?

Pick the brains of "been there, done that" moms who can fill your notebook with good questions to ask. The answer to these questions will show you the level of confidence and experience level of the doctor. Ask how many patients they see with this condition, and more importantly- how many they have operated on. Ask what the follow-up care will look like. Also, ask who they have studied with. The guru of colorectal issues is Dr. Levitt and Dr. Pena. Many doctors have worked under these guys, collaborated with them, and were trained by them. Know your stuff going in, so you can get all the information you need. Many doctors will give you advice on what to do- take that advice to your support groups to check it out. If you find that this advice is outdated, or not best for children with your specific condition, you might want to check elsewhere.

3. Will my insurance cover it?  This is a tough one, but a strong reality for many people. Call your insurance company to see if the visits/surgeries would be covered. Many times you can fight it, and write a letter explaining the necessity of the trip and experience of the doctor. There are many people in my support group that have done this. Even if your insurance will cover it, the cost of travel can be overwhelming. Transportation, housing, and food can add up quickly. Research ways to cut corners. Most major hospitals have a Ronald McDonald House that is either free or discounted. These houses also provide free meals.      4. What type of support do I have? You can't do it alone, plain and simple. You need emotional, physical, and medical support. We have family that is local, so thankfully we always had child care for the other children. Hannah has spent weeks in the hospital, and without people taking over our house, it just couldn't be done. When you are out of town, you can't just run home to check on things. You need a network of people to support you. I also can't tell you enough about the importance of a support group. Connect with other parents that know what you are going through. When you parent a medically complex child, you need someone that can understand your situation and can offer sound advice. I am in a group that has been my backbone through all of this. They have educated me, listened to my rookie mistakes, encouraged me when things aren't looking up, sent medical supplies when I was running low- you name it, they have done it. It is through this group that I have learned about the right questions to ask, what to look for, and what doctors to seek out. I also have connected with another mom, whose daughter is a patient of Dr. Alam as well. Her daughter is a few years older than mine, but they have walked our path. Dr. Alam says our girls are very similar, and actually jokes that my Hannah is her namesake. This precious mama has spent countless hours on the phone with me, talking me through different scenarios, and she has emailed me pictures so I can see what to expect.      We also still have medical support in Cincinnati, even though we have decided to stick with Dr. Alam out of town. We see a urologist in Cincinnati, who communicates with Dr. Alam frequently. When we had a complication a few months ago and Hannah needed a quick fix, we couldn't swing a trip to NYC. Dr. Alam was on the phone with our Cincinnati doctor, and the two collaborated to get the help Hannah needed. We are so very thankful for selfless doctors, and who truly value the well being of the children they treat. If you decided to travel for medical care, it is still important that you have medical support a reasonable distance from home.      5. How available are the nurses and doctors? Again, so, so important. When you parent a child that is complex, you will have complications. You will have many days that aren't right and you need quick answers from a reliable source. Our doctors are always available through email, and I have been very happy with my response time. We also have a critical care nurse that is available to us during the day by phone. I often joke that our nurse from Dr. Alam's office is also our therapist. She has talked me down from many stressful moments! Our nurse has done this work for many, many years. She can get us answers and help quickly. We got in a pickle just the other day and we needed a quick answer. I called the office in NYC, and I got an answer immediately. Not only did I get an answer, I had 3 follow-up phone calls within the hour to make sure everything was OK.      6. Relationships Sounds crazy, I know, but you will spend a lot of time with this person. They will be part of your life forever- or at least that is the plan. Hannah's kidney problems aren't going away. She will need care for the rest of her life. This is why we have decided to stick with Dr. Alam in NYC. He knows her inside and out (...literally!). He understands her. His patients are like his children. Have you ever had a doctor that doesn't seem to remember you even though you are there all the time? Dr. Alam is not like that. He has the most amazing memory of anyone I have ever met. He knows me (and when I am about to freak out) and he knows her. The trust we have with him is irreplaceable.      7. Trust your gut You are the mama. You know when something isn't right. You know when something feels a little off, listen to that voice and let it guide you. 8. PRAY Get on your knees, and let it all go. When you parent a medically complex child, you will have big decisions and little decisions. Decisions to travel or to stay- to give a specific medicine or not- to operate or not- the list goes on and on. Pray and trust that God will lead you and your child down the right path.   Our hero, Dr. Alam, before he performed an 11 hour surgery on her in NYC last summer.   Even though we are in Louisville, we make the trip to see Dr. Alam two times a year in New York City. When Hannah needed her second surgery, this time all urology, we were faced with the same decision as before. This time it was between Cincinnati and New York City. We knew the Cincinnati program worked and the doctors there were great, but the relationship we had developed with Dr. Alam and his level of expertise were unmatched, and we just couldn't risk it. It was a huge sacrifice for our family. Hannah and I spent almost a month in NYC last summer. All of those fears that I had about Hannah when we first came home are gone. She is growing stronger with every passing day, and has the same quality of life as any other 5 year old girl. We are so thankful for the medical path that we chose for Hannah, and pray that you will find that same peace on your medical journey.      We are so thankful for Hannah's medical care. She now has the freedom to truly LIVE in a healthy body! .......................................................................................   This is post seven in the "Medical Momma Toolkit: A Tips, Tricks and Encouragement Blog Series"