Baby born normal. When dad caught him in his hands, he was shocked. A baby is a beautiful thing, but takes so much work that even strong relationships often suffer for over a year and take take a lot of active work and understanding on both sides to maintain between the lack of intimacy, the constant needs of the baby, sleep deprivation, being touched out by the baby, et cetera.
It often takes months after birth to get to a place where you have the ability to do more than basic functions for the baby and approach having anything left emotionally to actively participate in your relationships with the father. In the early months after Fayetteville resident Cindy Chamberlain’s youngest child, Rebecca, was born, people would occasionally slip and refer to her as Jordan.
Rebecca’s middle name is Jordan, but the mistake was made as people confused her with her older sister, her namesake, who passed away 14 months before she was born, just three days into her life’s journey. Chamberlain, also the mother of two older boys, was never bothered by the slip of the tongue, though in fact, she welcomed it.
To me that was a blessing because people would remember our other daughter, she said. I’ve gotten teary eyed, but that was only because this person remembered I have two daughters. Chamberlain said she always wanted to have three children, but because her sons, Caleb and Joshua, were only 15 months apart, it took her a little longer to talk her husband tug into getting with the program.
She was 40 when she became pregnant with Jordan, so named because the prophets Caleb and Jordan crossed the River Jordan to get to the promised Land. In the Old Testament, there are a few problems red flags, as she calls them, earlier in her pregnancy, however, as she experienced bleeding.
But we knew we weren’t going to terminate, so we didn’t do any further testing. At 20 weeks, an ultrasound revealed a large heart defect. She was measuring small and my husband is six foot six and both of my boys were bigger babies, she said.
So the Cleveland native decided to seek care at Rainbow Babies and Children’s Hospital in her hometown. Trisomy, 18 and Edwards syndrome were mentioned, but her physician, who was the Department head, said she would need an amnio to know for sure.
She spent over two and a half hours talking me into having the amnio, which took ten minutes, she said, explaining she hesitated because of the risks involved with the test. Three days later, we found out she had trisomy. The test result was not a complete surprise to Chamberlain, who works as a pediatric physical therapist.
Because I’ve worked in healthcare for so long, from the first time I found out I was pregnant, I always felt like something was wrong, she said. I didn’t know what was wrong, but I didn’t have the same excitement. It was excitement with reservation because I felt something was going on, Chamberlain explains. A Google search of Trisomy 18 results in a quick return of not compatible with life. When your genetic code is laid out, an extra chromosome is laid down in that 18th place, she said, explaining down syndrome is Trisomy 21.
Why Trisomy 18 is not compatible for life, she said, is the million dollar question. Although she expected bad news, she was, of course, designated by the diagnosis. It was awful, she said. I didn’t get out of bed for two days, and when she did get out of bed, she was hesitant to leave home, concerned that unwitting people in the community would see her stomach. It’s difficult to hide a pregnancy at 30 weeks and ask how things were going for the rest of my pregnancy.
I took off work, spent a lot of time with my family and doing things with close friends, but didn’t put myself out there for that innocent person who didn’t mean to do that, she said. As she prepared to give birth to Jordan, not knowing if she would be born alive or still, she traveled the doctor’s appointments with the clothes she wanted to wear in case labor was induced.
Our relationship was established with the nonprofit Now I Lay Me Down to Sleep organization, which takes photos of families and newborns in hospitals. The goal, she said, is to provide families with free professional portraits that might not be possible otherwise. On June 4, 2009, Chamberlain gave birth to Jordan by Csection.
Within ten minutes, the entire family posed for a series of beautiful family photos, including portraits of her sons holding and kissing their baby sister. Early on in the pregnancy, her parents learned that she suffered from the genetic condition, which is usually life threatening, often before birth. Baby’s parents had no idea how much time, if any, they would have with their little girl before she would eventually succumb to her condition. Jordan’s prognosis was uncertain. Chamberlain said 75% of Tricomy 18 babies die before birth.
But three days into her short life, the Chamberlains prepared to take Jordan to Cindy’s parents home for two weeks before heading back to West Virginia. I was in the process of being discharged, Chamberlain recalled. Tug was holding Jordan, and he said, I think you need to check her because something’s changed. She passed away in his arms. Knowing that Jordan’s Trisomy 18, was a fatal diagnosis, Chamberlain said she decided ahead of time she was going to do her best not to fall in love with her baby girl.
She was going to try not to get attached. But the moment my husband brought her back into the or, my heart burst like it had with my other children, she said. It’s your child. There’s no way you can’t fall in love. I wasn’t prepared for that love or the power or that pain that came when she was gone.
In the days and months after Jordan’s death, Chamberlain became involved with Trisomy support groups. She started the new River Wave of Light each October to honor infant loss and is the administrator of local Trisomy Facebook groups. She regularly attends meetings dispensing advice to mothers facing the same road she faced nearly seven years ago. She tells them to celebrate their pregnancies. It’s one of the regrets she regrets.
I wish I had celebrated being pregnant more, she said. As a mother, it’s a special time because she was with me. That’s what I tell new mommies who are pregnant with Trisomy babies celebrate because you never know. No time is guaranteed. After losing, Jordan Chamberlain said she asked her doctor in Cleveland if she would tie her tubes.
I didn’t want to go through it again, she said. The doctor instead refused and told her how long it would be before she would be healed from the C section. It wasn’t long before Chamberlain appreciated the doctor’s refusal. She was hesitant at first and worried throughout. But the doctor assured her that having two babies with Trisomy would be like winning the lottery two days in a row.
The Chamberlains won a different sweepstakes with Rebecca. The best kind. She’s considered our rainbow baby, Chamberlain said after the loss of a child. God blesses you with a rainbow at the end, they make our life meaningful. Old is gold why those days marital life was so strong than these days.
It was because if children will start concentrating more towards their life rather than our own life, they create a bond between a couple again. It’s my own personal opinion. It may vary. In today’s changing trends of life. Everything has a positive side.
These are the positives of having children at home. Edwards syndrome, also known as trisomy 18, is a very severe genetic condition that affects how your child’s body develops and grows. Children diagnosed with trisomy 18 have a low birth weight, multiple birth defects and defining physical characteristics. Babies with trisomy 18 typically have complex medical problems. Birth defects are very common in these babies.
They may have defects of the heart, brain, spinal cord and other internal organs. Cleft, lips and palates are also more common in babies with tricomiate. They may have hand and foot anomalies. Babies with trisomy 180 may have difficulty regulating their breathing and temperature. They may also be unable to feed properly.
Because of the large number of potential medical problems. Babies with trisomy 18 are usually considered medically fragile. Most children with trisv 18 die before or shortly after birth. When a baby is conceived, a normal egg cell and normal sperm cell start with 46 chromosomes. The egg and sperm cell then divides in half.
The egg and sperm cells then have 23 chromosomes each. When a sperm with 23 chromosomes fertilizes an egg with 23 chromosomes. The baby will then have a complete set of 46 chromosomes half her from the father and half her from the mother. But sometimes an error occurs when the 46 chromosomes are being divided in half an egg or sperm cell may keep both copies of chromosome number 13 or 18 Instead of just one copy. If this egg or sperm is fertilized, Then the baby will have three copies of chromosome number 13 or 18.
If the baby has three copies of chromosome number 13, It’s called trisomy 13. If the baby has three copies of chromosome number 18, this is called trisomy 18. The extra copy of chromosome number 13 or number 18 Is present in every cell in the body. Sometimes the extra number 13 or number 18 chromosome or part of it Is attached to another chromosome in the Agar sperm. This is called translocation.
This is the only form of trisomy 13 or 18 that can be inherited from a parent. Some parents may have balanced translocation. This means the number 13 or 18 chromosome Is attached to another chromosome but it doesn’t affect their own health. A rare form is called mosaic trisomy 13 or 18. This is when an error in cell division happens after the egg is fertilized.