“Your life with Hemophilia has a purpose. You are fearfully and wonderfully made by God, who loves you. Turn your struggle into your story and use it to impact others.” -Lindy
Before becoming a mom to Lincoln, Lindy & her husband, Ben struggled to get pregnant. They were almost to the point of defeat when they received a prophetic word at church on Mother’s Day, 2014. Her pastor said to the congregation, she felt like she was talking to someone directly and that “this time next year, you will be holding a son.” Lindy found out two months later she was pregnant, and Lincoln arrived precisely one month before Mother’s Day 2015. She knew that her son would do great things and have an amazing testimony to share because he was truly a gift from God that she had prayed for.
When Lincoln was about 4 months old, they started noticing some abnormal bruising on his body. At first, they shrugged it off and thought he would be an easy bruiser like she was. But when the bruising increased in size and frequency, she started pressing their doctor for answers. After lots of appointments and tests without answers, they finally decided to change doctors. In December of 2015, at 8 months old, Lincoln was diagnosed with Severe Hemophilia B. A surprise diagnosis as there was no history of the disorder in her family.
Lindy remembers that for several months following the diagnosis, she thought they’d gotten it wrong because they were dealing with none of the things she was reading about the condition. Outside of the bruising, Lincoln was a healthy and happy baby boy! The Hemophilia diagnosis came to reality when Lincoln fell at 15 months old, and they were unable to get his mouth to stop bleeding. She remembers taking him to the hospital for his first factor infusion and how scary of an experience it was for them. Then, in October 2016, at 18 months old, Lincoln developed his first joint bleed in his ankle. That’s when they began pushing for a prophylactic treatment plan but ran into several obstacles with both his HTC (Hemophilia Treatment Center) and their local hospital. For 6 weeks they were sent to the ER 8 times due to reoccurring bleeds in the ankle. By late November they were finally set up to receive weekly factor infusions at the local hospital. His prophylactic treatment was going great for about ten months. Then, in September 2017, Lincoln fell in the bathtub and hit his mouth causing a bleed in his gums. After dealing with this mouth bleed for over a week and not receiving adequate help or support from their HTC, they decided to change to a new doctor and treatment center. Their new HTC immediately made them feel like they were at home. They felt loved and truly accepted for the first time in Lincoln’s hemophilia journey. Lindy addressed some issues they had been having with Lincoln’s care with their new hematologist. She told the new doctor that Lincoln had been having more frequent breakthrough bleeding, and he explained that he believes Lincoln was under-dosed. It was agreed to change his medication to try out a longer-acting factor. Luckily, they were still going to an infusion center to receive his factor because, during the first infusion with the new medication, Lincoln experienced an allergic reaction to this new medication. This caused him to go into anaphylactic shock. His nurse, who had done his infusions for over a year, immediately knew what was happening, and Lindy accounts for her fast reaction to helping save Lincoln’s life. After the injection began, Lincoln started pointing to his tongue and coughing, and he was holding his stomach, saying it hurt. Lindy said, “something is wrong, he’s having a reaction!” His nurse immediately pulled the needle and picked Lincoln up, and they all ran across the hospital to the ER so that he could get the treatment he needed STAT. While running across the hospital, Lincoln was turning red and vomiting. Lindy remembers thinking that this was the scariest moment of her life, up to that point. There would be many more scary moments in his journey in the months to come.
Following an overnight in the hospital and a few days after this incident, they went back to the new HTC for blood work and found out that Lincoln had developed an inhibitor. Lindy felt strongly that he was just allergic to the longer-acting factor and wanted them to test the previous medication to see what would happen. So, under close monitoring and with extreme precautions in place, infusions were performed to test how he would react. He had two successful infusions without incident. But when hey returned to the HTC for the 3rd test infusion, Lincoln experienced an allergic reaction to the medication. They knew then that it was an inhibitor and not reactions to the one medication. , “This is what started the journey that was the hardest of our entire lives and lasted from October 2017 - July 2018”.
During that time, they were admitted to the hospital every month - usually more than once. The shortest admission was three days. Lincoln had multiple bleeds during this time because he could not receive the factor 9 treatment that his body needed. Most of them were in the same ankle, but he also had one in his arm. Due to the reoccurring bleeds, he received a PICC line in December of 2017 so that they could infuse with a bypassing agent more regularly at home. In February 2018, he had a port-a-cath placed, and for the first two weeks, they had to go to the hospital every day to get his infusions. After getting used to his port, they decided to do ITT (tolerization for his inhibitor) at the end of April. This hospital stay lasted 12 days while they slowly tolerized his body to Factor 9. Upon discharge, they infused every day so that his body would continue to accept the medication.
Everything was going well until the end of June when he started to have another reaction during one of his infusions. Lindy was terrified that his inhibitor had come back. When they took him to the hospital, they found out his port had become infected, and he was taken by helicopter to the children’s hospital because of how concerning his symptoms were. They stayed in the hospital for several days, and Lincoln was treated with antibiotics. When they were discharged from the hospital, they continued antibiotics at home, where he again had an allergic reaction, but this time to the antibiotics. He was covered with hives from head to toe, and they were sent back to the hospital for another week while he was treated.
They spent days at a time in the hospital every month for almost a year. The impact of these challenges took a significant toll on them and their lives. Lindy and her husband were unable to work consistently, and the financial stress that came from the medical expenses paired with an inability to work was daunting. But through family & resources within the Hemophilia community, God continued to provide.
Since July of 2018, Lincoln has been completely desensitized, and there have been no hospital stays and no bleeds! For a while, Lindy said she “held her breath daily” waiting for something to possibly happen because she had gotten so accustomed to the challenges that kept repeating themselves. Lindy credits her faith and prayers from people all over the country for being able to get through this season of their journey. She gives all thanks and glory to God for helping her family “stay above water” through it all. Lindy is now active in the hemophilia community. She loves to offer advice, prayers, and support via online support groups. She has been a speaker for the coalition for Hemophilia B at their annual fundraiser and conference. When asked what she is passionate about today, she says, “I’m passionate about advocating for our son and about connecting with other moms who have children with rare conditions. Our journey has given me such a heart for people who are going through difficult situations - whether with Hemophilia or any other health-related issues.” She also says, “I am excited to watch Lincoln’s journey from here and to see the way that he uses his story to impact the world.”