Parents’ Beloved Rainbow Baby Born With Rare Condition

Andrea West is one very brave mother. She shares her life story of how she lost her baby and the grief and the pain that followed. Many parents who went through the same ordeal felt for her and her husband and were encouraged to speak out loud themselves.

The couple met during their college years and knew they would be spending their life together. They moved in at Andrea’s place in New Jersey, and by October 2006 they were married.

Their life resembled a fairy tale, and learning she was expecting a baby only added to their happiness.
Flickr/Andy Rogers

Sadly, just 11 weeks into pregnancy, Andrea suffered miscarriage and her world turned upside-down.

“I was an absolute wreck. I didn’t know what to do, who to talk to, what was appropriate to discuss, or who could help me. Little did I know that 1 in 4 women suffer the same and people just don’t talk about it. I didn’t know if I could ever deal with being pregnant again.”

Love What Matters

Andrea blamed herself for losing her baby for a long time, but her supportive husband was there by her side to assure her everything was going to be alright. Shortly after, Andrea was pregnant again and this time she made sure she did everything right, including controlling her weight by leading healthier life.

“I didn’t drink any diet soda (my life blood), didn’t eat lunch meat, soft cheese, sushi … nothing on the ‘naughty list.’ I followed the blogs and community pages. I read the books and set up my nursery the ‘right’ way. When I found out I was having a boy, my heart grew 3 sizes. I have always had many guy friends and I couldn’t wait to be a ‘boy mom!’”

The couple welcomed their rainbow baby into the world on 21st September. Andrea gave birth naturally, although she had hardly any amniotic fluid.

They named their bundle of joy Adam, after her husband’s friend who died at the age of 21 from a brain tumor.

These new parents were over the moon, but when the doctor didn’t call Andrea’s husband to cut the umbilical cord, but rushed to do it himself, they felt something was wrong. That’s when the doctor told them some devastating news.

“‘Honey, there is something wrong with Adam’s leg.’ I was exhausted, a bit delirious, and just wanted to hold my baby, but I will never forget my response. ‘I’m sure it’s just a bruise.’ I gave birth in a teaching hospital and before I knew it at least 20 different people were in the room. Doctors, nurses, and students got to see my newborn baby before I got to really see him. They brought him over to me for a few minutes before whisking him off to the NICU. Then… everyone left.”

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At first, no one knew why the baby’s abdomen and part of his leg were all covered in red markings and bruises, but he was eventually diagnosed with a rare vascular malformation known as Cutis Marmorata Telangiectatica Congenita (CMTC). At the time, only 500 cases of this condition have been reported.

In my mind, he was the most beautiful thing I had ever laid my eyes on. My rainbow baby. But, would he be OK? I was euphoric and crushed at the same time.”

Doctors ran all sorts of tests, as well as brain and heart ultrasounds, and Adam passed all of them and was discharged from the hospital.

During the first weeks of his life, Adam had seen many dermatologists, geneticists, and orthopedists. All of the tests these doctors did would come back normal.
Love What Matters

Ever since Adam was born, his parents are researching and learning of his condition. They have attended many conferences, including one at Washington D.C. where they met with other families whose children have this condition.

Most of the people and the doctors there have never heard of CMTC, and Andrea and her husband make sure as many people as possible learn of it.

The only thing these parents were worried about was whether Adam would fit in with the other kids. So far, he’s doing amazingly and does everything his peers do. He’s involved in sports and loves being around his friends.