Second Child - Part 2

Time was getting closer for Second Child to join our family. We had decided not to test him for hemophilia until he was born. My OB was so fabulous! He helped to make sure we coordinated well with Primary Children's hospital to ensure the delivery of my son went as smoothly as possible. When First Child was born he was poked a lot because they were running many different blood tests. These multiple pokes caused bleeds and in turn caused more problems. We wanted to eliminate these problems for Second Child, especially if he had hemophilia. We made sure we had a plan in place so that all the medical staff involved knew exactly how we wanted his birth handled.

We decided to use Second Child's umbilical cord blood to test for hemophilia, that way we could eliminate unnecessary poking. There were also orders in place that no forceps or items like that would be used during labor in order to minimize potential trauma. In addition, he would not be circumcised or given any shots until after the hemophilia test results came back. I felt so calm having all this in place. I was confident in my doctor and I was comfortable with how things had been set up. Now all we had to do is wait for the big day.

In the very early morning of April 3, 2003 I went into labor. At the hospital I remember looking out the window. It was one of those years that winter decided to stay longer than necessary and a soft snow was falling down. I worried about the doctor being able to drive safely to the hospital because the snow was starting to stick to the roads. Luckily, he lived very close to the hospital. Second Child came much faster than First Child. Once I had gotten to the hospital, Second Child came only 3 hours later. We were over joyed when we could finally hold him in our arms. We were so thankful to have another healthy baby in our family.

The doctors and nurses followed through with all that we had planned. The cord blood was taken and sent off to the lab. In my mind, I had already determined that Second Child would have hemophilia. I had to mentally prepare myself for what my future was going to be like. I pictured lining the boys up for their pokes. Poking First Child then moving onto the Second Child (and of course they would both be angels and not fight me during the pokes). I thought back to having an infant with hemophilia again. That stage of hemophilia, for me, was definitely the hardest. If First Child was crying and I couldn't console him, my first thought would be, "Does he have a bleed? Or is he just crying because his head hurts or his tummy doesn't feel good or does he just feel like crying?!!" It was difficult for me because this helpless little baby couldn't verbally tell me what was wrong. I had to go with my mother's intuition and pray that it was correct.

It took two days for the hemophilia test results to come back. My husband got the call from our nurse at Primary Children's hospital. He called me immediately with the news. He said, "We got the test results back...Second Child does not have hemophilia". We both broke down crying. I was so thankful that Second Child wouldn't have this trial in his life. But then the thought struck me, First Child is in this alone...he won't have a little buddy to say, "Hey, it really stinks when we have to poke and mom misses" or "Hey, isn't it pretty awesome that we both get so much attention because we are so tough and can handle pokes" or "Hey, I really wish we could play tackle football together". I felt a deep sadness for First Child and that he wouldn't have this bond with Second Child. So, in the same moment I was crying for both of my children for two very different reasons.

Things happen for a reason. I don't know or even understand the reason but I will accept whatever I am given. I will always move forward with faith and try to understand that there is a bigger picture, to this thing we call life. I'm am so thankful for my little family and the experiences that we get to enjoy together.

Second Child

Let's skip forward to three years later after First Child was born. I had the distinct feeling that another child needed to come into our family. This was a very scary decision! I had found out that I was in fact a carrier of the hemophilia gene which means if we have a boy, he had 50% chance of having hemophilia. If we have a girl, we have 50% chance she'll be a carrier and pass hemophilia onto her boys. My husband and I knew first hand how difficult it was to have one child with hemophilia. Were we willing to risk having two?!

We love our First Child more than life itself but this was a hard decision. The cost alone for hemophilia clotting factor is astronomical. A single infusion of 1500 units costs approximately $1,500 and we infuse every other day. It's a lot of money and we are so thankful for good insurance companies who pay the majority of the costs.

We had prayed and put a lot of thought into this decision. We finally decided it was time to welcome another child into our home. When we found out I was pregnant and we were both so excited and nervous! We hoped for a girl but we would welcome a boy.

I don't remember how far along I was at the time, but far enough that I had a baby bump that was showing. We had an appointment up at Primary Children's hospital for a check up for First Child. Our hematologist came in and did he usually quick check of First Child. He looked at me and noticed my belly and asked if I knew what I was having? I wasn't far enough a long to know so, I answered, "Not yet." Then he asked if I was planning on having the baby tested for hemophilia before it was born. We weren't planning on it. It was a very invasive procedure and, to me, wasn't worth the risk.

This doctor was one that I had never connected with and he was very quick to share his opinion, whether it was asked for or not. He told me that he thought it would be best to have my baby tested for hemophilia and if it tested positive, it wasn't too late to abort it! I couldn't believe the words that were coming out of his mouth. A doctor! A hematologist! Telling me to abort my baby if it tested positive to having hemophilia!! I was so angry! My husband and I had already made the decision that we were okay if our next child had hemophilia. It was a risk we were willing to take, in order to grow our family. We knew hemophilia and we were okay with dealing with it again. I was so taken back by what the hematologist had said. I told him we knew the risks and we were willing to accept them. My blood was boiling. I was so grateful I had the self control NOT to punch him in the face as he walked past me to leave the room.

Weeks and weeks went by and it was finally time to find out the sex of the baby. In my heart, I knew it was going to be a little girl. It's what we had hoped and prayed for. I remember the ultra sound technician checking my baby's lungs, heart, brain...everything was developing as it should. During the ultra sound, I had slipped and said something or other about the baby being a girl. First Child, got mad because he knew for sure that it was going to be a boy, like him.

It was time to find if we would be having a boy or a girl, my heart was pounding. The technician pauses and says, "Are you sure you want to find out the sex of your baby...?" Of course we did! Then the technician said... "You're going to have a...boy!" I can't lie but at that moment my heart sank. I started to doubt myself. Can I really have two boys that are affected by hemophilia? Am I strong enough? Will I be a good enough mother? Is this something I can really handle? All these thoughts and more raced through my mind.

Then next day, I was rocking First Child and reading him a book before nap time. The book we were reading happened to be about a little baby boy. The thought of having another boy with hemophilia just hit me again and I started crying and asking all those questions in my mind again. However, after a minute or so, I thought to myself, "I wanted this baby in my life with or without hemophilia. I'll be sad today but tomorrow is a new day." After that day, I wasn't sad about having a little boy any more. I just wanted to make sure I was ready to be a mom of two sweet little boys.

To be continued...

First Child

I had been married for 3 years and was 25 years old when I had my first child. We had anticipated his arrival for 9 months and we couldn't be more happy that he was finally here. We felt very blessed, that even though the delivery was long, he had arrived safely and he was healthy, or so we thought.

I remember I felt so much happiness and joy holding my new baby. The time came for the nurse to come and to take him back to the nursery. When I handed him over, I looked down and there was blood on my sheets. I thought the blood was from me and that I had been the one bleeding. I lifted up the sheets and there wasn't any blood on me. I was troubled by this and looked up at the nurse who was holding and checking my baby. She had found that his PKU shot was still oozing blood from underneath the band-aide. I remember her joking that maybe the other nurse had poked him too hard for his PKU, she was kind of mean.

The next few days were a blur, the doctors decided that they needed to run a bunch of tests to figure out why he wouldn't stop bleeding. I remember a bunch of medical people coming into my room and asking me a bunch of questions like; Is there a history of a bleeding disorder in your family? No. Have you ever had any bleeding problems? Do you have a family history of hemophilia in your family? No.

When this question was asked I remember thinking, "hemo what?!!" Then I had remembered watching a movie about a little boy with hemophilia. The movie showed a scene where the boy was sledding down a hill, crashed and got hurt. I remember the mother mixing some medicine, that she had to give, by poking her son in his vein. When I was watching this part of the movie, I remember thinking, "Boy that would suck to have to deal with that!" Little did I know that, that would be something I would have to deal with later on in life...

Five days after my baby boy was born, he was diagnosed with severe hemophilia A.