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Hunter's Story

"I'd like to share my son's story. He was a preemie born with cCMV, and died at 4 months old..."

Hunter's journey began in November 2011, about three months after my husband and I learned I was pregnant. We found out we were having a boy and were told that he was a little small and that he had an echogenic bowel. At the time, we were told that it was completely normal and since the nurse didn't sound too concerned, neither were we. She scheduled a follow-up ultrasound for a couple months later to check up on it.

That ultrasound occurred at 27 weeks when I found out that the baby was severely growth-restricted with no apparent cause. I was scheduled to undergo a bi-weekly fetal nonstress test that week. By the second test, I was admitted overnight for observation but woke up the next morning to a group of nurses standing over my bed. A couple hours later my doctor came in and informed me that in less than an hour I was going to have a C-section because something was wrong with the baby.

Hunter was born on February 11, 2012 at 12:28pm, at only 1lb 8oz and 12" long (classifying him as a "micro-preemie"), and was immediately rushed to the NICU before I got a chance to see him. In the NICU he was intubated and treated for jaundice, while the nurses stayed at his bedside 24 hours a day trying to keep him alive. Several days later after a head ultrasound revealed small calcifications in his brain, the doctors ran some tests and confirmed that Hunter was born with congenital CMV from an infection that occurred during my first trimester. The doctors said that congenital CMV is serious and could continue to cause medical challenges for Hunter for the rest of his life - challenges such as blindness, hearing loss, mental retardation, and various learning disabilities. This news was concerning, but all we wanted was for our son to be OK and come home with us. We were determined to be the best parents possible.

A week later, Hunter suffered from severe respiratory failure that left him unable to breath, requiring him to be set up on a high-frequency oscillator. The next day he was transferred to CHKD in preparation for surgery to correct a patent ductus arteriosus (PDA). After the surgery his breathing improved significantly. He was tolerating breastmilk fed via gavage tube, and several weeks later graduated to a regular ventilator, then to CPAP. At this time all of his IVs were removed and he required little medical intervention, and the doctors were very optimistic about his outcome. We introduced him to his big sister (8 years old) and encouraged other family members to bond with him as well, in anticipation that he would be home in a couple months as the doctors predicted.

When Hunter we about two months old (3.5 lbs) he suffered another respiratory failure that landed him back on the ventilator, then eventually to a high flow nasal cannula (HFNC). We were informed that the calcifications that were previously found in his brain had not become any worse. His attending at the time predicted that Hunter would likely not suffer severe neurological effects from CMV, and that his only CMV-related symptoms were related to his blood platelet production and poor lung function - both of which are conditions that are normally very treatable. He also had an inguinal hernia, and a paralyzed vocal cord caused by a damaged nerve from his PDA surgery and frequent intubations (thus, we have never heard Hunter cry). Both of these conditions were also correctable as well.

On May 7th Hunter was switched back to CPAP and then back on the ventilator two days later. At this point he was officially diagnosed with chronic lung disease. The doctors started him on dexamethasone and put him on Vapotherm (a cannula-delivered form of CPAP), and he did well on this for a couple weeks. However, he slowly started to decline again and required more and more oxygen support. There were many times where I'd be holding him and he would be limp, lethargic, and blue. He was soon put back on the ventilator again because there was no other option. After that we begged the doctors to try a tracheostomy, but the ENT doctors wouldn't perform the procedure because he was too medically unstable.

My husband and I started to have an overwhelming feeling that Hunter was not going to make it. He was often maxed out on the ventilator and still not getting enough oxygen, and the nurses regularly had to resuscitate him - a procedure that is not fun to watch. We were no longer allowed to hold him or help much with his care because even the smallest amount of stimulation would cause him to desat. Hunter was soon diagnosed with pulmonary hypertension which is a serious complication causing one side of his heart to work much harder than the other. He was also screened positive for an MSSA infection, and started on antibiotics and nitric oxide to treat both conditions.

On July 3 we received the call we had been fearing for over 4 months. Hunter's heart rate had been dropping steadily throughout the day and the doctors were not able to bring it back up. They gave him numerous doses of Epinephrine to no avail and had been manually pumping his heart while administering CPR, but his heart would not beat enough on its own. This went on for almost an hour until he became unresponsive. Hunter passed at 2:55pm. He was 4 months, 3 weeks, and 1 day old, weighing only 5 lbs 1oz. He died from PPHN (persistent pulmonary hypertension of the newborn), caused by chronic lung disease, caused by congenital CMV.

Hunter has touched the lives of everyone that met him and even those that didn't, knowing that he truly was a miracle baby. Rich and I are so proud to have been his parents, and while this experience has proved to be both a blessing and a trauma, the memory of our first born son will never be forgotten by us. He is currently buried in Princess Anne memorial park in Virginia Beach, VA.

- Shared by his mother, Vanessa

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