Diagnosis: PFV
Kaitlin had a feeling that Lucas was going to change her life when he refused to turn from the breech position, and she had to have a cesarean section. When he finally entered the world, he weighed in at a whopping 11 pounds! When Kaitlin first met her baby boy, she immediately noticed he was quite unique having one blue and one brown eye. The doctors examined Lucas and assured her that he was perfectly fine. With enthusiasm though also to ease her mind, Kaitlin excitedly texted her aunt, a neonatal nurse, that her new son had two different colored eyes. Her aunt was a bit concerned but after being told that the doctors had said he was all good, the concern dissipated.
After being home a few days, Kaitlin was admiring every inch of her new baby when she caught a quick glow of white flash over his eye when he turned his yead. She had never noticed anything like this before with her older daughter, so Kaitlin tried to recreate the glow. Kaitlin noticed it repeatedly and then went to her husband to make sure she was not being paranoid. As a very calm voice of reason and excellent sounding board for Kaitlin, her husband also said he had noticed the glow and was also internally questioning if something was wrong with Lucas’ eye. Kaitlin emailed their pediatrician that very evening and received a prompt response informing her that she needed to bring Lucas in the first thing in the morning to be seen.
Kaitlin could not sleep that night. She was trying to research as much as possible, so that she would know what to expect the following day – good news or sad news – she wanted to be prepared. Kaitlin had found the KnowtheGlow website and saw there were many diseases that could be associated with the glow in the eye. The pediatrician did not say much to Kaitlin that morning and instead suggested that she follow up with a pediatric ophthalmologist at Duke University since they did not have the correct equipment to give a proper diagnosis.
At just two weeks old, Lucas was seen at Duke University by Dr. Gnuedi, a pediatric ophthalmologist who specializes in cataracts. Right away, Dr. Gnuedi reassured Kaitlin that she did not believe that the glow was retinoblastoma but wanted to do an exam under anesthesia to confirm. Dr. Gnuedi believed that Lucas had PFV, persistent fetal vasculature. The one thing he did confirm was that Lucas had no vision in that eye and he would never have that vision. It was a gut-wrenching moment, even as the doctor assured her that Lucas will still have a normal life, and that the only things he might not be able to do are to be a pilot, or join the military or law enforcement.
The moment you hear the loss of vision, as a parent you also begin to mourn the loss of sight for your child. Kaitlin was distraught at the thought that her son was half blind, and although not having many limitations, it is hard to process. Kaitlin jumped a Facebook group of other parents with PFV and found complete comfort in all their stories. One parent had commented to Kaitlin that she was mourning a loss for something she feels, but something her son never had. That profound comment has helped give Kaitlin the strength in her son’s diagnosis. Another one of Kaitlin’s friends on Facebook had also reached out and said not to wish the days away while she was waiting for the Exams Under Anesthesia (EUAs), and to cherish every moment she has with her son. Kaitlin began to do just that while waiting for the EUA and her whole perspective changed.
At five weeks old, Lucas had his first EUA. Dr. Toth, a retina specialist at Duke, was also present during the EUA. Dr. Toth told Kaitlin that the retina was so entangled in blood vessels, there was no hope in attempting reattachment.
Now, Lucas is a thriving 7-month-old, and no future surgeries are currently planned. They continue to have follow-ups with Dr. Glasser at Duke to make sure that the pressure remains stable in his eye and to maintain the aesthetics of the eye. Recently they have noticed that his eye is starting to wander a bit, but until he is age five, no surgery will be done to correct it and even then, that is a choice Kaitlin wants to leave up to Lucas when it is time. There is no longer a visible pupil for Lucas either, and a possibility of a scleral shell is in the future but until that day, Kaitlin is remembering some of the profound words she was told and enjoying every milestone with her baby! At KnowTheGlow we are so happy to share Kaitlin’s story and Lucas’ journey. We know there are some amazing milestones waiting right around the corner for him and that with his incredible parents, supportive family, and stellar support team at Duke there’s no telling where he might go! At KTG we’re not quite ruling out pilot…the sky is the limit for little Lucas!