Our Story

I would like to introduce myself. I’m Elizabeth and I’m married to James. We have a beautiful son named Benjamin. He has severe hemophilia A with inhibitors..  I’m a nurse (but I stay at home with Ben) and my husband is I the army. Here is our story.

We decided to get pregnant. Nothing ran in our families so we were expecting no complications. My pregnancy was wonderful. Then at 34 weeks my water broke. I was admitted to the hospital and 6 long days later Benjamin came in to the world at 35 weeks via c-section because he failed to descend. I kept asking what his apgar score was (a score that basically says how well the baby is after birth) they would not tell me. They put a hat on his head. Let me kiss him and my husband held him for a brief second. And they whisked him away. When I was in the recovery room they told me that he was in the nicu on oxygen. I finally made it to the floor and my husband said they would not let him see the baby. We called up there and they said to come pick up some paper work and supplies for breast milk. My husband came back and told me there was something wrong with Bens head. The next morning the doctor came to talk to us and told us that Ben had a subgaeal hematoma. That is a bleed in between the scalp and skull. It looked horrible. They had no idea what caused it. They needed our consent to give blood transfusions. They ran a clotting test called a Prothromin Time (PT) but every sample clotted before the lab could run the test. After a week they said we could take him home. We roomed in with him. They did a heal stick on him and he bleed thru a band aid paper towel house shoe and six blankets. He no longer could maintain his temperature. They took him back to the nicu and ran tests. The next morning they did a ct scan and found a subdural bleed. This is a bleed between the brain and skull. They wanted consents to start cryoparticiapate which is packed blood cells and give him a drug called Novo7. They were consulting with a neurosurgeon. They told us the baby would need brain surgery to evacuate the blood. We went to see him. We were waiting for the next step and all of a sudden they said it was time for the surgery. We had a priest come and baptize him. And he went down. The surgery took about 2 hours. When the surgeon removed the skull the hematoma expelled itself because of all the pressure. He also had some clots in his brain that they removed those clots caused him to have a stroke. They inserted a Picc line in his head. So they wouldn’t have to keep doing ivs in his hands. They kept him on a ventilator and in a medically induced coma. After a few days we were transferred to a large city where we immediately got a diagnosis of hemophilia a. His level was 16%. They started advate and weaned him off the ventilator. Ben did so well. He started eating on his own so they could remove the feeding tube. He held his own temperature. It was wonderful. Then his IV accesses stopped working, even the Picc line. We were then bombarded with people who wanted to put in a central line. I asked for a central line for days. We consented for one and they decided to put in a picc line at the other hospital. This whole time a hematologist only spoke to us to give us the diagnosis. NO other time. We kept asking. SO after a hematologist spoke to us and told us he had to have the broviac (central line) to go home. He did very well with that surgery. We were soon able to take him home. The only thing we knew is we had to give advate three times a week and they told us he would never get to be a normal boy. We had lots of questions that they would not answer. Like can he play baseball or ride a bike. Do we get extra advate in case he falls? You know stuff like that. They said our questions would be answered later on his life. I got tested and I am a carrier at 12%. And we retested Ben and his level was <1% so he is a severe. Lots have happened since all of this. He now has a port. He also has an inhibitor. That complicates the situation even more. I have met some awesome people thru all of this. He is doing really well. We attend Physical therapy and occupation therapy and many many more appointments.