This has been a really scary few days for us, but I have learned a lot that I feel like I have a responsibility to pass along to all of you. Please read this with an open mind and know my goal is not to criticize anyone, but to share with you what we have learned so far on our journey with Girly McBaby and hope that our experience can somehow help others.
One of my besties sent this to me for encouragement, it’s a little cheesed but so true.
On Friday we had the last of our bi-weekly appointments with our OB in Chicago to check the growth of Girly McBaby’s SCT. Remember- last time it appeared to have gotten smaller so we weren’t really too worried. After the scan I met with my Doctor and she told me that not only had the tumor doubled in size in the past two weeks, but that there were severe signs of anemia in her brain. Our Chicago OB knew we were planning on moving to Houston the next week to continue our treatment there, but she felt the situation was urgent enough that the probable next course of action was either an intrauteran blood transfusion, or that I would have an emergency c-section to deliver sometime in the next few days. She was going to try to get me into maternal fetal medicine (MFM) specialists in Chicago asap.
I immediately called our incredible nurse coordinator at Texas Children’s Hospital who spoke with our Chicago OB and got updated on the situation. Appointments were made for me to check into Labor and Delivery in Houston the next morning where I would have tests to confirm the Chicago OB’s findings, and then either be admitted to the hospital to be monitered on bed rest, receive an intrauteran blood transfusion, or deliver.
I called my mom to make me flight arrangements for that night. They checked my cervix and did a stress test on the baby to make sure I was ok to fly, while Pete ran down to the pharmacy in the building to get my steroid prescription to speed up Girly McBaby’s lung development in the likely occurrence I would be delivering the next day. Side note: Steroid injections hurt like hot devil fire. The nurse injected it into my butt while I leaned over a table and I nearly donkey kicked her in the ladyparts. Brutal.
Pete and I rushed home and I packed up as much of my stuff as I could and drove to the airport to make my flight.
At 8am on Saturday I arrived at St. Luke’s labor and delivery where I was met by Saint Carmen- Nurse Coordinator and general kind shepherd of scaredy mothers everywhere. Pete is in finals so my best friend Laura came with me. Pete had a noon flight booked and was waiting on standby to hear whether or not he needed to fly in that afternoon. We met with the incredible ultrasound tech from my Houston OB/MFM’s office who spent nearly an hour thoroughly scanning GM and checking the measurements from the Chicago OB. My MFM Specialist came in and rechecked her findings.
Which ended up not being necessary, because nothing at all was out of the oridnary. The tumor had grown very rapidly in the past two weeks, but we knew from the beginning that SCT’s are unpredictable and hers is still very small for her condition. There was no evidence of anemia, hydrops, or any unexpected or concerning stress on GM. Not only would no surgery be performed, but I would be released as an outpatient. They decided they would want to follow me more closely, increasing our scans to twice a week from now on, but other than that Girly McBaby is measuring in at the 59th percentile and things are going as well as we can hope for.
My point in all of this is not at all to rip on my Chicago care. I loved my Chicago OB, and know that she and the ultrasound tech and everyone else there are incredibly capable and smart and only want the best for our baby. However, we narrowly avoided a really scary and learned an important lesson. It makes me sick to my tummy to think that if I had not known better to seek out specialists for GM’s condition, and had stayed under the care of my Chicago doctors I likely would have delivered a 29 week premature baby with serious medical complications this weekend.
I know my hospital in Chicago is a great hospital and I think a lot of families wouldn’t question what they heard from such a well respected institution. But I URGE you, if you receive an atypical and serious diagnosis for yourself and ESPECIALLY your babies, please do your research. Find out if the Doctor you are talking to is a specialist in that field. Find out where the research and best work is being done on your particular issue. I know not everyone has a homebase near a facility like TCH, but you can always contact these leading hospitals and ask for a second opinion before proceeding.
Not all levels of medical care are the same.
You have to be your own advocate to make sure you are receiving the proper care.
Just because a hospital has an amazing labor and deliviery program and is well-equipped to deal with premies, doesn’t mean they are as qualified on more rare neonatology issues. Just because a hospital has a great cancer treatment center does not mean they are experts at treating childhood cancer and so on. Texas Children’s Hospital happens to be one of four Children’s Hospitals in the US that has done extensive work with SCT’s, but that doesn’t necessarily mean it is the go-to for all Children’s medical issues either. It is so important that you educate yourself on the care you need and the care you are receiving.
I really believe that most Doctor’s have the best intentions, but sometimes they aren’t aware of what they don’t know.
In this case, the test my Chicago OB’s office used to determine GM’s supposed anemia was a test that was developed at Baylor (where my current OB/MFM is based) and it is a pretty complex test that considers many different measurements to reach conclusions. My Chicago OB just didn’t realize that the test requires you to measure blood flow several times and is super sensitive to baby movement, and once scanned results should be cross checked against other warning signs in the baby before a diagnosis is reached. I would generally rather people be over cautious, but when alarmism could have lead to such a devastating outcome, namely GM’s already challenging medical diagnosis being compounded by prematurity, it just scares me to death that this could happen to someone else.
But thanks to the unbelievable care we feel blessed beyond measure to be receiving from Texas Children’s Hospital- all is well. It was a stressful few days, but I have used the extra time to get settled into our living quarters for the next few months. Girly McBaby is snuggled up tight, kicking my ribs, and preparing for her late July debut as planned. Pete will finish up finals in Chicago on Tuesday and then join me down here. I am sad we didn’t get to have the Chicago send off we had planned on to say goodbye to some precious friends there, but I am mostly just so thankful that this misdiagnosis was caught, and that Girly McBaby is fine, and we are still getting through with the amazing support of our friends, family, and all of you!
And again, I hope everyone reading this knows that I have nothing but the utmost respect and appreciation for my Doctors in Chicago. I just pray that this scary situation we went through can help another family going through a similar ordeal better advocate for themselves and their babies, because I know first hand from our so-far wonderful experience at Texas Children’s Hospital what a huge difference that can make in the health of you and your most precious nuggets.
And afterall, aren’t we all just a bunch of otters trying to protect our pups?