The Hoffmans sent us off with a supportive kiss and hug as they took Cate that morning. Bob and I had no idea what we were in for, all we knew was that the baby had a major heart problem and we were heading downtown to Primary Childrens Medical Center (PCMC) for something much more serious than the stitches had received Cate the year prior.
To my surprise, the Echocardiogram was just like a regular ultrasound, but obviously focused on the baby's heart. The Tech must have taken about 70 images before calling the Cardiologist, Dr. Menon, who took more of his own images. When they were finished, they led us to a consultation room. The 5 min. wait seemed to be 5 hrs, and my eyes kept wandering over to the shelf of handouts -- there were about 20, 1 of which caught my eye: the Bereavement packet.
When the Dr. walked in, he was followed by 3 other people. Bob and I thought they were a bereavement team; I was waiting for the Dr. to grab the Bereavement packet I saw on the shelf, but when he didn't ...I breathed my 1st sigh of relief that week. Instead, he grabbed other packets and introduced us to the Cardiac RN, Kim, the Pediatric ICU Social Worker, Pat, and a student who was observing.
So, now for her diagnosis: Tricuspid Atresia. Her Tricuspid Valve never developed, which caused the underdevelopment of her right ventricle. In addition, she has Ventricular Septal Defect (VSD, a hole between her ventricles), and Pulmonary Stenosis. As he told us, it's a serious heart problem, but with 3 surgeries they can "re-pipe" her heart. She'll never have use of the right side of her heart, but as the left side is strongest anyway, she can survive without. Strangely, the VSD is what's helping her heart to function right now, in utero. Once she's born though, she won't have the ability to properly oxygenate her blood; she'll be cyanotic or a "blue baby."
Details on her diagnosis are here:
Essentially, she'll be facing 3 open heart surgeries (OHS): the 1st within a week of birth -- she'll receive a BT (Blalock-Taussig) Shunt; the 2nd when she's 4-6 months old -- a bidirectional Glenn procedure; and 3rd when she's 2-3yrs -- a Fontan procedure.
So, her prognosis for this is fairly good, barring any complications with surgery. Dr Menon told us life expectancy with this condition is now 60-70 yrs; she won't be an Olympic athlete, but she also won't be restricted either and she shouldn't need a heart transplant. He also told us that it's not a genetic condition, heart defects of this nature occur in 1 out of a 100 babies.
He did caution us however -- a final, definitive diagnosis cannot be made until she's here, and they can do an echocardiogram directly on her. As he said, her condition is relatively set, but other items may appear later, such as the connections with her coronary arteries.
But, considering Bob and I were expecting the worst (termination of the pregnancy), we were relieved after the appt that something can be done for her. At least we know what we're up against.