August of 2006 was a month we were waiting for with a great deal of excitement. It would be the month of the birth of our first daughter, Luisa.
After some complications and 14 hours of labor, Luisa came to this world through C-section. She was brought to me soon after, but would not stop crying. My mom opened the blanket she was wrapped in and realized Luisa was covered in blood.
Still screaming, and with me still drowsy due to the anesthesia, the nurses immediately took Luisa to the neonatal intensive care unit to examine her and treat her bleeding. At that point, they noticed that she had petechiae (small red, purple, brown dots) everywhere on her body and had jaundice.
She was kept in the NICU for a week, while recovering from her jaundice and awaiting for tests results. These tests didn’t come back from the hematologist department until the following week, when we learned she had a bleeding disorder called “Glanzmann’s Thrombasthenia”.
We were in shock and overwhelmed as any parents of a child with a bleeding disorder would be. We were scared and worried if our child would be able to live a happy, healthy “normal” life.
We were guided to a website called www.curegt.com. After reading the stories from other parents of kids with GT on the site, it helped to ease many of our concerns. As we read and learned more about the disorder on the website, we gained hope, and realized that we would have a support group for life, and another family so to speak.
Early on, we learned a great deal from Helen Smith, who was the founder of the GT website and the GT Foundation. Whenever Luisa had a difficult bleeding issue, Helen was always a text or a phone call away to help guide us through treatment and calm our nerves. As with many others in the GT community, we learned a lot from both Helen and Julia, her beautiful young daughter with GT.
As a child, Luisa faced many different challenges including frequent nose bleeds, and bleeds caused by many other sources including inoculations, the loss of baby teeth, dental procedures, swallowing ice, using a drinking straw, and various scratches and cuts. Bumps and bruises were common, and could arise solely from changing her diaper, wearing tight outfits, and wearing a seatbelt in a car. Normal falls as a toddler, including one that required stitches, were especially concerning given our fears of potential internal bleeding that may not be visible.
Some of these bleeding issues were easily addressed with pressure, ice packs, and bandages. Other bleeds required more creativity including the use of tea bags for gum bleeding, salt pork for cuts, and the occasional tampon in the nose. Lots of frozen smoothies (no straw) also helped with gum bleeding, and generally helped her maintain a happy, positive attitude.
As Luisa grew older into her pre-teen years, she faced additional challenges from baby tooth extraction, and menstruation.
While we were able to remedy many bleeds at home, others required hospitalizations and red blood cell transfusions. Helen Smith taught us early on to try to avoid platelets transfusions unless absolutely necessary, and we have been able to do that for most of her life (although she did require it following one serious bleed in her throat). When needed, we have made the decision without looking back.
Luísa grew up being very cautious, but we have always tried to let her be herself and do most of the things that healthy kids do. We have travelled abroad every year since she was three months old to visit my family. When traveling, we always contact local doctors and hospitals ahead of time to make sure they are equipped to treat GT patients. We also make sure we have all the supplies and medicine needed for a long trip.
Growing up with a bleeding disorder can be very challenging. Like all others with bleeding disorders, Luisa has had to sacrifice a lot throughout her life. For example, she didn’t always get to participate in games or sporting activities like the other kids. She has missed out on several planned trips with school, friends, and family due to unforeseen bleeding issues. She has had to miss valuable time at school for medical emergencies, and at other times has had to power through classroom work feeling tired and weak with low hemoglobin levels and a lack of sleep. Nevertheless, she always maintains a positive attitude and rarely complains.
Although parenting a child with GT can be challenging at times, these challenges are not insurmountable with a strong support network. We will forever be grateful to Helen Smith, her legacy, and all of the others in our GT family. We couldn’t imagine the last 14 years without her help and our GT family.
