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Conner and Logan's Story
"At 28 years of age, and after being told I would never have another baby, I was thrilled (and frightened) to find out I had become pregnant with twins..."
Concerned about the risk of developing twin to twin transfusion, my doctor referred me to a perinatologist who did ultrasounds every 3 weeks to monitor growth of both babies. At my 20th week, I was told both babies were boys....and that they were concerned about possible fluid on their brains. Because of this development my appointments were moved every 2 weeks and the fluid was monitored very closely.
I was finally scheduled to deliver at 37 weeks, 2 hours from home, but would be in a hospital with level III NICU. The morning of the surgery, I met the neurologist who was to evaluate both boys and put shunts in to drain the fluid that was now in each chamber of their brains. Conner was born first at 5 lbs 4 oz followed closely by brother Logan at 4 lbs 5 oz. Both had a blueberry muffin rash (indicating bone marrow under their skin) and were extremely jaundiced. Being that they are identical, they shared the CMV. Within an hour of their birth, I was informed that both boys would be flown to a hospital a few more hours away that had a level IV NICU.
Having had a c-section, I had to stay in the hospital while entrusting my babies to nurses and pilots, while their dad hopped in the car and tried to race the helicopter. I was very pleased with the contact that the nursery kept with me, I received daily calls to update their status until I was able to be with them. On day three I was able to join Conner and Logan at their temporary home.
They were in isolation because the virus was active and shedding, they were receiving multiple platelet and blood transfusions daily, they were on nasal canula oxygen, and had NG feeding tubes. I was informed they had tested positive for CMV; had microcephaly; enlarged spleen, liver, and kidneys; and were not maintaining blood levels or platelet counts. Good news? An MRI indicated that the fluid on their brains had cleared on it's own but had left bruising, or damage.
After 14 days of the transfusions, Logan was volunteered to give a bone marrow sample to test for multiple other conditions that could be causing the blood issues. After this test came back clear, we had to figure out how to stop their bodies from "eating" their platelets. We went 3 more weeks with no improvement and no progress, so our doctor put a call in to a CMV specialist at Baylor Medical and discussed the options with her. We are now at day 40 in the hospital and have made no advancement in their care. Having never dealt with 2 babies who had the exact same problems with no explanation of the cause, we decided the best course of action would be to remove both boys spleens. It was thought that the spleen was attacking their blood because of the virus and that removing, even though it would cause problems with infection, was the best course of action to give them progress. The morning of surgery our doctor received a call from the specialist who suggest postponing the surgery and instead trying Gancyclovir. So, the next day both boys were sent for Broviac Catheter placement after being beefed up with bags of platelets for fear of bleeding out.
Their first dose of Gancyclovir was giving on day 60 and continued at 12 hour intervals. Within a week of receiving that first dose, their platelet counts had more than doubled; though not out of the woods, we were making progress. At day 70 they were 3 times higher and climbing. Finally after 76 days in the hospital, we were able to take our babies home, where they continued their treatment through home health.
They were considered high risk for infection and we weren't allowed to go anywhere! At the doctor appoinments we were quickly shuffled to a room where everything had been sterilized right before our arrival. We were on 8 daily medications and slept A LOT but we were home and that was wonderful!!
At their 1 year checkup, both boys were diagnosed with Cerebral Palsy. Most doctors will not give that diagnosis before a certain age, although we had been told to expect it because of the brain damage. Logan, who was always more muscled up than his brother, was first to roll over at 15 months, first to crawl at 20 months, and to pull up at 28 months. Conner, who I call my relaxed one, didn't care to get around. He was perfectly content laying under his toys, or sitting with someone and so his progress was much slower. He first rolled over at 20 months, crawled at 26 months and pulled up at 37 months. Conner talks from the time he wakes until he goes to sleep while Logan hasn't mastered the art quite yet.
They just celebrated their 4th birthday on February 9 and the progress we have made is amazing! They both have tubes in their ears because of development issues, we go to school 2 hours each day where they receive their Speech/Occupational/Physical therapies, we see a Physiatrist who give botox injections to allow easier stretching of their legs, and we see the Shriners once every 6 months. Each boy has a walker, a wheelchair, and their own way of dealing with each obstacle they meet. Though they are identical, they are very different and definitely unique!
When I first learned that Conner and Logan's illness was preventable, I was so angry. Angry at my doctors, at myself, at the entire world because I had never even heard of this virus that had now changed our lives forever. Now I know how lucky we are and spend my time counting each blessed minute that I have with my children. Please take the time to tell everyone about the risks of being infected with CMV and how easy it is to prevent it. Thank you for taking the time to hear our story and if anyone has any questions I am more than happy to answer.
- Shared by their mother, Heather