During my pregnancy I was labeled as “high risk”, due to bleeding complications. After 13 weeks, I was placed on strict bed-rest. With many trips to the ER, when I was 24 weeks I was admitted to the hospital. Christian was born at 27 weeks (August 2007) and weighed only 2 lbs & 9 oz. After I was released from the hospital I returned to work and would commute over an hour one-way to be with Christian until visiting hours were over. On the weekends I stayed at the Ronald McDonald house and I would spend the days beside Christian’s incubator. On Christians 13th day of life I arrived at the hospital to find a PICC line was placed on the top of my son's head. The doctors informed me that during a PICC placement procedure Christian lost too much blood and now required a blood transfusion. As soon as I was able to gather my emotions I called Christian’s biological father and he was able to go to the blood bank to provide the blood that Christian needed for the transfusion. As a new mother coping with postpartum coming in for my daily visits to see a PICC line in Christians head was devastating, but then to find out that a blood transfusion was needed was completely heart wrenching. (((Christians father never saw any reason to visit Christian more than once a month while Christian was in the NICU, because the doctors were more than qualified to take care of Christian. So I made all but 1 trip a month by myself, which also did not help with the post-partum))) Christian remained in the NICU for just over 3 months before he was able to come home. Prior to Christian being released from the hospital we were provided information for a Urologist to contact for the circumcision to be done after Christian was able to meet the minimum weight requirement. Three months later Christian was eligible for the procedure to be completed. After the circumcision and several trips back to the urologist due to the amount of bleeding Christian was experiencing. I was told that I was an overprotective paranoid new parent and not to worry that the bleeding would eventually stop and that this was normal. Weeks later the incision did heal, but still no tests were even suggested or done for Hemophilia.
Christian started walking when he was 10 month old, he was also cutting teeth. Every time he would stumble and fall down it would cause a mouth bleed. We could not get the bleeding to stop after a couple of days so I took Christian in to his Pediatrician. I was told that this was normal and I was just an overprotective parent. The bleeds never stopped, Christian was clumsy and constantly falling down causing bleeds. The day care that Christian was attending had separated him from the rest of the children in a crib lined with plexi-glass and was only given a few toys to keep himself occupied. The Pediatrician stated that they were going to reach out to another local hospital to see if there were any tests that could be done. The next day I took Christian in for lab work The week after Christians 1st birthday, I received a phone call from the Pediatrician saying that Christian was Factor VIII deficient. I remember asking, “What did that mean? What was wrong with my son?” The Pediatrician could not explain this to me and said a specialist in Pensacola should be reaching out to me. We arrived at his appointment with “Hematology/Oncology'' still completely mind blown, confused, and not sure what they were going to tell us. At the appointment the Hematologist explained Christian was a “bleeder” and with injuries his blood was unable to clot. At that appointment Christian received his first dose of Factor VIII and within a few hours the bleeding stopped.
Christian’s infusions were always a challenge. For Christian to receive his Factor, I had to sit him on my lap, put his legs under mine, wrap the other arm behind my back, and then hold his arm still so that his nurse could get the IV. As he got older it became more challenging to hold.
Just months after being diagnosed, I received a phone call from the daycare that Christian was in enroute to the Eglin AFB ER. Working on base made it convenient to arrive before the ambulance, with a dose of factor I kept in the car. Christian had a gash on his eyebrow and the blood was pouring down his face. Christian was strapped to a papoose restraint so that a paramedic could start an IV in his foot, while the doctors stitched up his eyebrow.
In 2013, I graduated with my bachelor’s degree the summer before Christian began kindergarten. This was a challenging time because I was a single mom, and working full time. Little did I know that year was going to bring all my knowledge of hemophilia to life. Christian started the school year off as your typical active and happy 5 year old. He was wheelchair bound for the majority of this year due to repetitive joint bleeds in his left ankle. Christian began three times a week prophylaxis, to prevent the recurring bleeds we had been experiencing. It was as if we would get one joint bleed healed and another one was right around the corner. As a concerned mother I reached out to my HTC because his left ankle was now more than doubled the size of his right ankle. I spoke with Orthopedics and was told that it was normal. The following month, July 2013, we met with another hematologist to have Christians ankle looked at again. Within the first 10 minutes of this we were told that Christian would need surgery to clean out his synovial membrane surrounding his ankle, to prevent loss in mobility and/or range of motion. Just weeks later we went to Jacksonville, Florida to meet with the surgeon who could do the procedure. We completed X-rays, MRIs, and lab work to prepare. His surgery date was set for September 2013. Christian was now 6 years old, and full of worries leading up to his surgery. The most heartbreaking question was the night before his surgery. We were brushing our teeth at the hotel before laying down for bed, and Christian looked over at me and asked “mama, you’re not going to let me die are you?” All I wanted to do in that very moment was hold him and cry, but that was not an option. So I kneeled down to him and gave him a huge hug and reassured him that we just drove several hours to make sure the best doctors were going to make his ankle better and help him get out of the wheelchair, and that I would be right there by his side. The next morning we reported for surgery and it was successful. Christian was admitted for 2 weeks, then released to the local area until his post-op appointment 4 weeks after surgery. Christian did not return to school for another two weeks as he still required a PICC line for his infusions.
After six weeks, Christian returned to school. He struggled academically, which resulted in him repeating first grade. Unfortunately, we continued to battle joint bleeds in his left ankle which required another surgery. We scheduled the surgery when he was not in school. When we got home, we had to go to the ER in order for Christian to get his infusions. During the post-op appointment with the hematologist we discussed how Christian’s veins were getting harder to access and that it was time to start looking at a port.
Knowing the possibility of a port, I began looking for another Federal job in Pensacola. This was due to the proximity to the Children’s hospital, and necessity to access care quickly when needed. I found a job in the Pensacola area and we moved in Oct 2014. In March 2015, Christian had his port placed. Christian has suffered from depression and self consciousness from his port. To this day he still doesn’t like to go to the beach because he doesn’t want anyone to see it.
To this point we had never came in contact with another hemophiliac. I remember when Christian was 4 years old, he shaved his head because the other children at the doctor’s were losing theirs and he thought that he would too. I had to explain to him that the doctor was not just for children with hemophilia they also treated children with other conditions. In December 2016, at the hospital where I worked, another hemophilia mom had noticed Christian’s medications at the Pharmacy and the staff explained who I was. The next morning when I came in to work I found her post-it stating that her sons also had hemophilia and she included her contact information. I reached out to her that morning and that was when she had invited us to our first Hemophilia Educational Dinner where we got to meet other hemophilia families, learned about a Hemophilia chapter that offered family camps, and summer camps for the children. Up until then it had always just been Christian and I as we don’t have any family that lives close to lean on for support or help. His biological father is not in the picture. So to find out that there were other hemophiliacs that could answer questions or provide information, was a blessing. What a difference it would have been to have other hemophilia families and the education that I have learned over these past couple of years from the beginning of Christians journey.
When you become a parent you put the needs of your children first, and when those needs require specific medical attention we realign our priorities, to fit all of their needs. So for the majority of Christians childhood, I did just that as a single parent. That was until I met Larry. Although Larry is a nurse, he did not know what hemophilia entailed. He began attending the dinners and has learned so much, he is now able to share that knowledge within the hospital that he works and mentor his peers. Since merging our lives together Christian now has his own personal nurse at home to ask questions, confide in, observe treatments, and explain all of the medical jargon to Christian on a level that he is able to understand.
I have always raised Christian that not everything always happens how we would like them too, but no matter the situation there is always something positive. We might have to really search for the positive, but it is always there.