Anne Street set a wall of five clocks at home to the moment of her marriage and the birth times of each of her four children. The accuracy of the time can be calculated in seconds.
Her eldest son George, 7, excitedly pointed to the clock with the time of 5:48:17 p.m. at a standstill – the clock in the top left corner.
“That one’s my clock!”
Then he turned around and ran to the toy tent. Anthony, 4, Anne’s second son, did not seem to care whether his birth time was on the top right corner, set at 5 p.m., or the lower right corner, set at about 7 p.m. He was more excited about the middle clocks: “The big one’s Daddy’s,” the clock celebrating the Streets’ marriage. Anthony’s clock is the one set at 5.
If Lorraine, the owner of the clock in the lower left corner, was still here, she would be able to show her age, with a mumbled language that others may not understand.
Lorraine Christine is the third child in the Street family and the only daughter. The 16-month-old girl, born on May 26, 2016, passed away on October 8, 2017, due to the heart defect Hypoplastic Left Heart Syndrome associated with Heterotaxy A-Splenia Syndrome.
“She almost spent all her life in the hospital, but when she came back home, we’d like to make her [feel] like everyone else.” said Anne.
Lorraine spent the first Halloween, Christmas and New Year with her brothers, parents, the 10-year-old dog Horton, and with Django and Scruggs, the two cats.
For the Streets, Lorraine will always be their girl.
Anne said her whole pregnancy was going well. But as a mother of two children, she quickly recognized that there was something wrong with Lorraine. “Every time she tried to eat, she couldn’t.” Lorraine was diagnosed at 16 hours old.
Hypoplastic Left Heart Syndrome, or HLHS, is a birth defect that affects normal blood flow through the heart. This means that the lower left chamber of the heart is severely underdeveloped. At the same time, Heterotaxy A-Splenia Syndrome indicated problems with other malfunctioning organs as well as a dysfunctional spleen.
Heterotaxy A-Splenia Syndrome is not a disease that would have caused Lorraine to die. But only 10 percent of children with a severe complex heart disease such as HLHS can survive until their second year, according to SyndromesPedia. Congenital heart defects affect nearly 1 percent of―or about 40,000―births every year in the United States, according to Centers for Disease Control and Prevention. The combination of illnesses posed a difficult challenge.
Anne noticed that Lorraine was struggling to eat the first night after birth, one of the symptoms that HLHS babies face. Generally, the babies have trouble breathing and a rapid heart rate shortly after birth, according to the website of Ann & Robert H. Lurie Children’s Hospital of Chicago.
A series of three surgeries typically treats HLHS. In this very complex treatment, the surgeon redirects blood flow to the lungs and the body, requiring the surgeries to be done in stages.
Lorraine survived the first two large-scale open heart operations at Lurie Children’s Hospital, but failed to live to the third operation after several other surgeries.
Just as she couldn’t wait for the arrival of her second Halloween, Anne said. But the family decorated her hospital room for the Halloween ahead of time.
“We made a lot of cobwebs, drew pumpkins, made stickers, which said ‘Lorraine, a big sister, welcomes Henry’.” Henry Street is the youngest child of the Street’s, born in September 2017. Lorraine became a big sister just before she passed away.
Even though she can’t recover from losing Lorraine, Anne’s life was driven forward for her husband and three sons.
“My life now is not as busy as it was with Lorraine going on the city, but we’re still all over the place because of our three boys. They keep us on our toes, but we have a lot of love. Lorraine is always with us every day, and we just keep going.”
“And that’s all.” George added straight after his mom’s words.
Anne has launched a fund-raising campaign in the name of Lorrainebows on her Facebook home page. The whole family set up a special Lorrainebows team, Anne with her mother Lorraine Pintozzi climbed to the top for the Aon Step-up benifit for Lurie Children’s Hospital in January. The family is signed up for the Children’s Heart Foundation’s walk in June in Lincoln Park. Profits of the sales of Lorrainebows t-shirts, made by the family, will go to the foundation as well.
“We may not be able to heal her physical body, but by raising funds and awareness through fundraisers such as this one, we can help her heart brothers and sisters of the world and hopefully allow them to live longer on this earth than she did.” Anne said.
But for Lorraine’s father Tim Street, the footsteps moving onward are not so simple. He confesses that the community activities such as the Lorrainebows team and campaign are mainly done by Anne.
“But I tried for Anne’s sake to be involved,” said Tim. “If it’s important to her, it’s important to me.”
Still, “It’s too hard,” he said, whether thinking of Lorraine, mentioning her or meeting her in the garden – the name the family uses for her grave site. Even with all their sons sharing a room, it is too tough to take Lorraine ‘s things out of the her room now, he said.
Tim said they aren’t planning on a new baby girl.
“But it doesn’t matter. Four boys make me become the only girl. That is also good,” said Anne with a childlike smile on her face.