“Everything was going according to plan. I was happily married, graduating from a medical residency, and beginning the third trimester of pregnancy with my first baby. My dream job would begin a few months after my baby was born. Life was picture perfect.
Until that point, my pregnancy was typical and the baby appeared healthy. In the third trimester, I was diagnosed with gestational diabetes. At 34 weeks, I noticed my baby stopped moving much, which I thought may be due to recently eliminating sugar from my diet for the diabetes. I made an appointment with my doctor that day, and in less than 24 hours, my baby was born via emergency c-section.
Doctors told me my son, Jackson, should not have survived to birth. He was born with a severe level of anemia not compatible with life, and had almost no platelets or white blood cells. He received several transfusions at birth and for the days following. He was rushed away from me and transferred to a more specialized NICU. We were not allowed to hold Jackson for days, and when we finally could, we had to wear gowns, masks, and gloves. I was not allowed to have skin-to-skin contact with my own baby, due to his immunocompromised state. His anemia, low platelets, and low white blood cell levels persisted, puzzling the doctors and prompting a lot of blood tests.
At seven weeks old, Jackson was diagnosed with Diamond Blackfan Anemia (DBA), a bone marrow failure disorder characterized by failure to produce hemoglobin. He required blood transfusions every 2-3 weeks to survive. However, he was unique in that he was also not producing adequate platelets or a type of white blood cell, making him very immunocompromised. I was giving him daily injections to try to stimulate his white blood cells to protect him from deadly infections. Sometimes the injections would work and sometimes they would not.
Jackson had blood drawn at least once per week. He was hospitalized every 3-6 weeks with fevers and infections, which could have turned deadly within hours due to his lack of white blood cells. Instead of enjoying his milestones, I was pinning my infant down so he could be poked with needles until they could finally find a vein to use. Sometimes it took ten pokes before an IV was started. It never got easier for me or Jackson.
At nine months old, my husband and I decided to pursue a bone marrow transplant for Jackson. With every blood transfusion, he was accumulating organ-damaging levels of iron overload. Due to his immunocompromised state, he could never leave the house except for doctor appointments, and he couldn’t have visitors. He never met his family members outside of my husband and I. I had given up my career to be available to rush him to the hospital at the first sign of a fever. This was not a life we wanted for Jackson or our family, and we were willing to take the chance on a risky bone marrow transplant to put his bone marrow failure into remission.
Just before Jackson turned ten months old, we temporarily moved 12 hours from home to a new state, to be near an expert transplant hospital. Jackson underwent intense chemotherapy to eradicate his faulty bone marrow and make room for the new cells. He received cord blood stem cells from an anonymous donor. We finally had hope for Jackson’s future. Little did we know about the complications we were about to face.
Just a few weeks after his transplant, Jackson was diagnosed with thrombotic microangiopathy (TMA), a rare life-threatening complication from transplant. This complication led to destruction of red blood cells, low platelets, kidney failure, fluid accumulation around his heart, gastritis, and severe hypertension. He was requiring transfusions daily at one point. He was retaining so much fluid he couldn’t breathe. He could not tolerate food in his stomach for months, not even through a feeding tube.
He underwent two heart surgeries to drain excess fluid around his heart. At one point, he was on six different medications for his high blood pressure, and it was still uncontrolled. He was transferred to the ICU three times and the cardiac unit once. We were told three times that our son may not make it through the night. Fortunately, after 125 straight days in the hospital, Jackson overcame these challenges and was discharged to live within a five-mile radius of the hospital.
We spent the next few months living in a nearby apartment and taking Jackson to the hospital almost every day for doctor appointments, blood work, therapy, and scans. Since the chemotherapy completely killed his immune system, we only left the apartment for these medical necessities and still were not allowed any visitors. Miraculously, Jackson stopped requiring transfusions as his new bone marrow began making red blood cells and platelets. His white blood cells were also slowly being made. His doctors told us it would take at least one year before his immune system would recover to the point where he could leave the house or have visitors, but he was making great progress.
We moved home just before Thanksgiving, after spending seven months away. We have been grateful to be in our house together and reunited with our dogs, even though we still must live in isolation, only leaving the house for occasional doctor appointments. We have not seen our family or friends in over a year. Being mindful of flu and cold season, my husband has been able to work from home and runs only necessary errands early in the morning to avoid exposure to germs as much as possible. We have a strict routine of showering and changing clothes every time we enter the house. We wash our hands so much they are raw. We constantly disinfect commonly touched surfaces. We do not bring packages inside of the house, in case the delivery person sneezed on it. We think about every possible way we can eliminate germs, because even the common cold could kill Jackson.
At nine months after transplant, Jackson’s immune system continues to grow. He is still considered immunocompromised, as he is lacking some important pieces of the immune system he needs to fight infections. It just takes time. His doctors were hopeful we could take him out of the house for the first time ever this summer. We could introduce him to his family members and friends. We could let him play on a playground, like a normal toddler. However, now our future is unknown again as the Coronavirus pandemic has erupted.
Although my husband and I feel like we have become experts in keeping germs away, the Coronavirus scares us due to its unknown nature and the panic-buying surrounding us. A lot of the available and credible data about the new mutation of Coronavirus is preliminary and unclear. No one can say for sure how the virus is transmitted, or how long it survives on surfaces. My husband no longer runs our errands, and instead we are depending on delivery groceries. We no longer buy fresh produce, just in case someone sick has touched it. We wipe our packaged groceries with disinfectant wipes before bringing them in the house. We have canceled in-home therapy for Jackson. We have tightened our bubble around Jackson, more than we thought possible.
Even though we have gotten used to living in isolation, or ‘social distancing’ as it is referred to currently, our way of life is affected too. We can’t find our daily cleaning supplies online and can’t go to the stores to try to buy them as soon as the shelves are stocked. The meal delivery services we have used for over a year are now too overwhelmed with pandemic customers to meet Jackson’s dietary needs. The grocery stores are cleared out of the foods that are on Jackson’s restricted diet.
It is disheartening to see others not care about the spread of this new virus. Restaurants, bars, and malls are still open and crowded in our state, despite deaths and community spread. I read so many posts on social media of people not concerned about getting coronavirus because they are healthy and will survive. I am so tired of headlines reading ‘only the vulnerable will die’ because my son is one that will die. Another part of our story I have not yet disclosed, is I am also included in this vulnerable population as I am almost seven months pregnant.
After feeling robbed of a normal end to my first pregnancy and beginning to motherhood, my husband and I were ecstatic to find out we were expecting another baby boy this June. We went through extensive testing prior to conceiving to ensure we are not carriers for Diamond Blackfan Anemia or other serious diseases, in hopes to have a healthy baby. We felt like this would be our chance to enjoy a more normal third trimester and birthing experience. We were hopeful to witness the baby milestones we missed with Jackson, due to all our time spent in the hospital.
However, with the presence of a pandemic, we are again full of worry and questions. Will I be able to find foods I can safely eat with gestational diabetes? Can I safely get to my OB appointments, or will I catch coronavirus and bring it home to Jackson? Will I be delivering this baby on my own, so my husband doesn’t get coronavirus in the hospital and can still care for Jackson? Will the baby or I get coronavirus while in the hospital, and bring it home to Jackson? What if I need blood during child birth and there is still a national shortage? What if the baby needs a blood transfusion like Jackson did? Once again, we feel robbed of the end of pregnancy and possibly the birth of our second child.
We have fought so hard for Jackson’s life and future over the past 19 months. We are terrified after all Jackson has endured, the Coronavirus could be the end for him. We are willing to continue to make sacrifices to keep him safe, even if that means living in isolation for another 19 months. It is not an easy lifestyle, but it is doable. It hurts to see people unwilling to try to live our lifestyle for a few weeks or a month, for the good of mankind. We wanted to share our story in hopes we can inspire even just one more person to socially distance for this period of time and save the lives of those like Jackson. If you are going stir crazy and absolutely need to get out, please donate blood products, as there is a national shortage.”
This story was submitted to Love What Matters by Jamie Dermatis. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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