My name is Johnson Flanagan. My beautiful wife Anastasia and I have three boys. Mason, who is 2 years old, and the recent additions of Liam and Larson. While Mason came with his own crazy story (for another day!) Today I want to talk about our journey with Liam and Larson. My wife and I had been trying for a second child to add to our growing family and we were ready for the commitments that it would bring.
After a positive home pregnancy test, my wife went in for a dating ultrasound on March 17th, 2017 to more accurately establish a due date. On that day, we received the wonderful surprise that we were expecting twins. We had expected the excitement of having twins to be the big surprise of the pregnancy. Little did we know, it was only the beginning.
On May 17th, during a routine ultrasound, doctors discovered a severe imbalance between the fluid levels of the two twins. This imbalance was a huge concern to the doctors so they sent us to Maternal Fetal Medicine (MFM) the next day for a consultation. The doctors at MFM suspected the development of Twin-to-Twin Transfusion Syndrome (TTTS), a rare condition where blood vessels connect the two embryos. Because of this, one twin becomes the donor twin and does not receive enough nutrients and blood flow. The other twin receives an overabundance of nutrients and blood flow, placing extreme strain on the heart. We were given three basic options:
1. Terminate the pregnancy
2. Do nothing (less than 5% chance of life for one twin)
3. Go to Cincinnati Children’s Hospital and see if it was possible to treat through surgery.
We obviously chose option three, and my wife and mother-in-law drove late into the night/morning to get to Cincinnati for a 7:00am doctor appointment. At the end of the day, the doctor at Cincinnati Children’s Hospital had not seen enough evidence to confirm TTTS. However, they were concerned and wanted us to continue monitoring the situation while my wife remained on bedrest.
Less than two weeks later, we were on our way back to Cincinnati because the situation had continued to deteriorate. This time, the doctors agreed that there was enough evidence to indicate TTTS. They immediately scheduled my wife for surgery the following day. (At this point, my wife was only 17 weeks pregnant.) This surgery, called a laser ablation, created a tiny incision into the uterus. Once the cut was made, a camera was inserted so the doctors could map all of the blood vessels that connected the two boys. After the connecting vessels were identified, a laser was used to burn away the connections one at a time. There were a lot of risks with the procedure. The operation in and of itself could have sent my wife straight into labor. Until the doctors were able to see the vessels, there was no guarantee that either child would live. The risks were particularly high for the donor twin (Liam), because the doctors were unsure if there would be enough blood vessels left connecting him to the placenta. We were originally told that once the blood vessels were mapped the laser portion of the surgery would only take about 15 minutes. Liam and Larson had so many connections it took them over 30 minutes to sever all of them.
Following a successful surgery and one night in the hospital, my wife was released to a local hotel and put on strict bed rest for a week. At the end of the week she went back in for another appointment. Sonograms showed the surgery had been successful, so she was released to come home.
We had a fairly uneventful month (i.e. nothing catastrophic happened). Then on July 8th at only 23 weeks gestation, my wife’s water broke with no other signs of labor. The clinical diagnosis for this is pPROM (preterm Premature Rupture of Membranes). She was admitted to the hospital and the doctors began preparing for the worst. They informed us that most pPROM patients go into labor within the first 24-48 hours after rupture. After that, the vast majority of the remaining patients go into labor within the first week. My wife lasted 7 weeks and remained in the hospital on bedrest from July 8th until August 28th. Routine fetal monitoring and regular ultrasounds showed that the boys were still healthy, but during that 7 weeks, Liam suffered from oligoamniohydrosis (significantly low levels of amniotic fluid). Often, Larson had low fluid levels as well. Despite this, Doctors were pleased with how long she had remained pregnant and were even discussing a scheduled C-section for the end of September. Once again, our plans were disrupted when my wife went into labor.
On August 28th, our twins Liam and Larson were born via C-section almost ten weeks early. They were quickly rushed to Neonatal Intensive Care Unit (NICU). Liam was only 2lb 12oz. Larson was slightly bigger at 3lb 8oz. For the first few days they were facing an uphill battle as doctors worked to stabilize issues with their lungs and heart. We didn’t even get a chance to hold them until they were four days old. Luckily our boys are strong, and before long they were moving in a more positive direction. Once they reached a more stable state, they began the long process of developing the skills necessary for them to come home. Being born 10 weeks early, there are certain things that a full-term baby is able to do that a preemie has to grow into. They spent a week receiving most of their nutrients through an IV until their digestive system was able to process food. They received various levels of breathing support until they were almost 2 weeks old. Both of them were on and off phototherapy for high bilirubin counts. Larson spent the first 5 weeks of his life in an enclosed plastic box called an isolette (basically a temperature controlled incubator). It took Liam 6 weeks to be able to get out of his isolette. Both of them are constantly visited by doctors, occupational therapists, speech therapists (to help with feedings), nutritionists, developmental pediatrics and other specialists to monitor their care. They have had eye exams, echocardiograms, head sonograms, hearing screens, and constant blood work to check for developmental disorders. Right now the last major hurdle to getting them home is that they need to learn how to eat all of their food orally. Currently they still receive over half of their food through a feeding tube in their nose. We are so close to transitioning out of this crazy chapter of our lives and being able to be home as a complete family.
We are grateful for the health and progress of our boys, but unfortunately, all of the hurdles we have had to overcome have cost a lot of money. I will spare you the nightmare of all the costs, problems, and numerous hours on the phone with the insurance company. I do however want to highlight just a few of the costs. Our in-network maximum out of pocket cost is around $8,000 for the year, which the NICU stay alone has already hit. Once we learned they were twins, I started preparing because we had expected them to come a bit early. I did not expect or prepare for the gamut of problems we have been through though. Our insurance has a contract for Cincinnati Children’s Hospital. However, they do not have contracts for all of the doctors there and another hospital just down the road that the children’s hospital partners with.. In order to confirm TTTS, we had to have ultrasounds done at the hospital down the road. These two different ultrasounds are around roughly $18,000. I was initially able to convince insurance to cover these bills since they were not preauthorized, but it was a medical emergency. They did “cover” them, but considered them out of network, which means we still pay 100% of all bills until we hit around $45,000. Some of the doctors we met and consulted with for the surgery were considered out of network as well, even though the surgery they performed was in an in-network hospital. One of the medicines that the doctors had prescribed to my wife to help keep her from going into labor has a $150 co-pay per month. This cost also does not apply to our out of pocket maximum. In addition to these and other costs, both boys will have a few ongoing medical evaluations that will continue into the next year. Hopefully nothing will come out of them, but it is still continuing medical expenses that will begin a new out of pocket maximum starting January 1st.
Beyond even the direct medical expenses, there have been other costs incurred. Either myself or my wife have driven to Champaign over 70 times in the past 6 months (roughly 5,000 miles). This has led to far too many fast food meals. Furthermore, the long time in the hospital and on bedrest has cause my wife to take a temporary leave from her full time job as a teacher, so until January we are operating on less than half of our income.
I am working on filing for financial assistance with our medical bills at the three primary hospitals we have been in. I have also consolidated and cut out numerous bills several month prior to the boys being born. Despite all of these things, we have had so many different bills pop up I do not know how we are going to pay for all of the expenses we have accumulated over the past six months. We have been incredibly blessed so far through the journey, but will still need some help. Please consider donating or sharing our story.
DonationsSee top donations
- Scott Degroot
- Ethan & Nicole Hoinacki
- Taryn Flake
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more