What Nobody Tells You

Posted on Posted in Hypoplastic Left Heart Syndrome, Trisomy 13 (Patau syndrome)

By Gina McGarey I didn’t want kids until I was in my 30s. This past summer we started trying. Fast forward about 4 months and we found out I was pregnant. We were both super excited and planned all of these different ways to tell our parents, siblings, and friends (I have some amazing videos of us telling most of them). This would be the first grandchild for all of our parents and the first great-grandchild for half of our grandparents. My mother-in-law believed she would die before she had grandchildren. Needless to say, everybody was beyond excited. At my first doctor’s appointment, the nurse […]

The Hardest and Easiest Decision

Posted on Posted in Hypoplastic Left Heart Syndrome, Stories, Trisomy 18 (Edward's syndrome)

By Ava’s Mom Today my mom called me about my cousin and his wife who are expecting their first baby. We are very happy for them. Their baby is breech, so they’ve  scheduled a c-section which will take place on my second child’s due date. It hit me that I should be planning a first birthday party. It also hit me that for my cousin’s wife, the worst thing happening is she can’t have the vaginal birth she wanted. I have had three children vaginally, but only two are living. My first pregnancy—a chemical pregnancy—ended before it really began.  I didn’t think of it as […]

Ella, My Only Girl

Posted on Posted in Hypoplastic Left Heart Syndrome, Neural Tube Defects, Spina Bifida, Trisomy 13 (Patau syndrome)

by D. L. I had just turned 35 and had decided that I wanted another baby. I had three beautiful boys, and had a feeling that if I got pregnant again I would have my little girl. I always wanted a girl. Don’t get me wrong I adore my boys, but I still really wanted a girl. My husband and I argued a lot about the subject because he was done with having kids. We did keep trying though. It didn’t take long and I was pregnant. I was very happy. This was the first pregnancy I really planned. I felt great. I had horrible nausea with the […]

Willow, Our “Back to the Future” Baby

Posted on Posted in Hypoplastic Left Heart Syndrome, Induction/L&D, Stories

By Mrs. E. Getting the News I was so excited when I saw that my pregnancy test was positive! It was the weekend before Valentine’s day, and I decided to surprise my husband with a “My First Jaguars Football Book” which I’d bought a long time ago and saved just for this day. Giddy and bursting with happiness, I gift wrapped the book along with my positive pregnancy test. When he got home from work I said I had an early Valentine’s gift for him. He seemed a little confused by his early gift. I was smiling ear to ear. He opened the gift and eyed the test stick, still baffled. Before he […]

Compassion & Courage

Posted on Posted in Congenital Heart Defects, Hypoplastic Left Heart Syndrome

By Monica Palase I just read Kate’s story and it was amazing. My husband and I had our first son, CJ, on August 12,1991. He was born with HLHS. At that time, they were just starting the surgery to correct this and he underwent open heart surgery at 10 days old. We lost our precious angel on November 16, 1991. I was set on not having anymore children, but my CJ told me not to give up. I was told when I got pregnant again that I would have the option of aborting the pregnancy if this child had the same condition. It is not something […]

Baby’s Boots

Posted on Posted in Congenital Heart Defects, Hypoplastic Left Heart Syndrome, Induction/L&D, Stories

By L. B. I am 21 weeks, two days pregnant and have decided to terminate my pregnancy. This is my first pregnancy. I had wanted to conceive for several years, but my husband was not ready. Then for Christmas this year, he surprised me with a pair of baby Timberland® boots. It was his signal to me that he was finally ready for fatherhood. The first time we tried to conceive, I got pregnant. I couldn’t believe how easy it was. I was nauseated and tired the first trimester, but nothing out of the ordinary. I am very athletic and continued running. During my eighth week of pregnancy I […]

Choosing Compassion

Posted on Posted in Congenital Heart Defects, Hypoplastic Left Heart Syndrome, Induction/L&D, Stories, Trisomy 21 (Down syndrome)

By Grace O. A mother, who found out her unborn baby had Hypoplastic Left Heart Syndrome (HLHS), decided to carry him to full term. But she did not have him undergo the series of surgeries that might have saved his life. She said, “You must believe that the decisions you are making are the right ones for you, your baby, and your family; founded in love, they cannot be wrong.” Although my choice was different from hers, I agree with her statement. When it comes to parental decisions, and there is no one-size-fits-all correct choice. It is all too easy to judge another’s choice or […]

Parachutes

Posted on Posted in Congenital Heart Defects, Hypoplastic Left Heart Syndrome, Trisomy 21 (Down syndrome)

Grace O. About nine months after making my heartwrenching choice to end my 20-week pregnancy due to a combination Hypoplastic Left Heart Syndrome and Down syndrome, I conceived again. That was a tough decision, one I had to make all over again each month that I did not get pregnant. Getting pregnant again is not a decision I would have made if abortion had not been legal. After what we’d been though, it was terrifying to even consider trying again. I now understood only too well that poor prenatal diagnosis wasn’t something that only happened to “other people.” The best prenatal behavior, medical care or […]

Cupid’s arrow

Posted on Posted in Articles, Congenital Heart Defects, Hypoplastic Left Heart Syndrome, Stories, Trisomy 21 (Down syndrome)

Grace O. Few things irritate me more than people griping about how much they hate Valentine’s Day. “It’s just a Hallmark holiday,” they whine, “Why can’t people say I love you every day instead of waiting for Valentine’s Day? I hate chocolates. I never have a date. Roses are a waste of money. It’s stupid.” These petty complaints crop up every year. And I have to stuff my response, resist the temptation to stun the complainers out of their self-absorbed grousing about how tough it is for them to tolerate another Valentine’s Day. So I let them sulk about romance, or polish their tiresome hipster cred […]