After months of patiently waiting, Robin Pownall and her fiancé, Michael DeMasi, couldn’t wait until the day they welcomed their twin baby boys to the world. On October 14, 2017, at 33 weeks pregnant, that day finally happened for the Philadelphia, Pennsylvania parents.
7 Weeks Premature
While the boys were born prematurely at 33 weeks, it’s extremely common for twins or pregnancies with multiples to be born before coming to full term. Robin and her fiancé, who are parents to 9-year-old and 4-year-old sons, expected that they wouldn’t get to go home straight after the birth…
Admitted To The NICU
As the parents expected, the twins named Santino ‘Sonny’ and Giovanni ‘Gio’ needed to stay at the Children’s Hospital of Philadelphia so that they could both be monitored as well as give them time to develop and gain their strength before being sent home.
A Rare Finding
However, shortly after being born, doctors noticed something concerning about the twin baby boys. They performed more tests on them both to be sure they knew what was going on. Once Gio’s and Sonny’s tests both came back positive, it was time to break the news to their parents…
Chronic Granulomatous Disease
According to the team of doctors treating the newborns, Sonny and Gio had been born with Chronic Granulomatous Disease or CGD. CGD is a rare inherited disease where the immune system does not function properly and is unable to fight infections as well as a healthy immune system.
1 In A Million
According to the doctors, simple germs and infections that an immune system should be strong enough to fight can become deadly if they are not treated quickly and properly. While hearing the doctors talk about the disease, which occurs every 1 in a 1,000,000 births worldwide, Robin’s heart sank…
A Familiar Feeling
However, Robin’s heart didn’t sink because she was overwhelmed by all the scary statistics and information that was being thrown at her. Robin and her fiancé’s heart sank because they had already heard everything about CGD once before.
The First Born
Robin’s oldest son, 9-year-old Dominick, had also been born with CGD and was diagnosed a few weeks after his birth. When she discovered what the disease was, she was terrified for her fragile newborn and how it would affect the rest of his life…
Since no 1 in the family was a match, Dominick was placed on a transplant list. When he was finally matched with a donor, he was given the cells from the donor’s umbilical cord, which cured him of CGD. However, since CGD was a genetically inherited disease, Robin knew that this would likely not be the last time she encountered the disease if she chose to have more children.
Beating The Odds
A few years later, however, Robin became pregnant and gave birth to another baby boy, Michael. The new parents expected doctors to tell them that he had inherited CGD, so they were overjoyed when doctors told them they had given birth to a healthy baby boy with a healthy immune system…
Hoping For The Best
So when Robin became pregnant again with 2 twin boys a few years later, she was thrilled and had more hope during the pregnancy that neither of them would inherit CGD and that her family would never have to deal with the terrifying disease again. Sadly, that didn’t happen.
Like Dominick’s case, neither parent was a match for either Gio or Sonny, who needed a bone marrow transplant to cure the disease and give them normally functioning immune systems. The parents worried that there only option would be to put the boys on the transplant list, which could take months to find a donor…
A Tough Decision
Not only would it be dangerous for the twins to wait months for a donor, but it would also be extremely expensive for them to keep the twins in the hospital until they could undergo the bone marrow transplants. But before they resorted to waiting on the transplant list, the family experienced a miracle.
Test results came back that found the twin’s 4-year-old brother was a perfect match. Not only did this mean they wouldn’t have to wait months to find a donor, but doctor’s explained that bone marrow from a family member was less likely to be rejected…
Risks And Complications
Robin and her fiancé spoke to the doctors more to find out what were the risks and complications of donating bone marrow and going under anesthesia. While they would do nearly anything to save Gio and Sonny, they wouldn’t put their other son in danger to do it.
Breaking The News
Once they knew all the information, they sat down with Michael, who knew his brothers were sick and knew that he had been tested to see if his bone marrow was a match. “We were in no way, shape or form going to push anything,” Robin said…
No Sugar-Coating It
“I’m the match? I’m the match,” Michael said excitedly when his parents told him the news. “We were straight up,” Robin said. “‘It’s going to be a big needle going into your back, bud.’ We asked him, ‘Do you want to do this? If you’re scared, you don’t have to.’”
A Selfless Choice
Even after being told that the procedure would entail having a large needle pushed into a bone near his hip, Michael was still happy to do it. “Part of me was like, ‘Well, he’s 4. Maybe he doesn’t know what’s going on.’ But he did, and he was all for it,” Robin said. The worried parents agreed they would put the twins on the bone marrow registry if Michael was ever reluctant, but that never happened even when doctors sat him down to make sure he understood what he was agreeing to…
A Proud Older Brother
“He was all for it and we had a good feeling about it. It’s amazing — he’s so proud. Such a brave little guy.” On March 8, 2018, Michael went into the hospital and bravely underwent his procedure. Afterward, he was up and playing and jumping around like nothing happened. He even got to watch as doctors gave his brothers the stem-cell infusion. “I saved you guys. It’s time to go home,” Michael said proudly.
Home At Last
“Giovanni received the bone marrow cells around 2:30 pm then Sonny received the bone marrow cells around 5:30 pm. Both babies are doing well and sleeping. Now is time for their bodies to heal, with the new bone marrow cells to build up a healthy immune system,” a family member wrote on a GoFundMe account. Thankfully, the procedure cured the twins of CGD and on May 1, 2018, they were finally released from the hospital.