This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, September 7, 2009

History (Single Umbilical Artery)

As usual I’m up at midnight pumping. And as usual, I’m reading heart mom blogs… So tonight I was reading Santiago’s mom’s blog (Tammie Bernal). Her son has trisomy 13 and she knew nothing about this. From what I could gather, she also had a two vessel cord (Single Umbilical Artery) like me. Also, like me… she wasn’t allowed to see her child for hours until after she gave birth. So, her blog/story inspired me to write a little more about Scarlett’s early days, and the pregnancy days since some people might not be familiar with it.. Here it goes:

I had a very eventful and rough pregnancy. First of all, Scarlett was unplanned. She was a surprise, although a welcome one. Early in my pregnancy, I started having major drama at my work (revolving around my supervisor). Around 14 weeks, I started getting major abdominal pains. Sharp, shooting unbelievably painful upper abdominal cramps. If I didn’t know better I would swear they were contractions. Around this time I also lost 100% of my appetite. I knew I had to tell my boss I was pregnant, but the tension between us was so great, that I didn’t want to tell her, so I kept it a secret as long as possible.

The pains didn’t go away, and the appetite never returned. I assumed it was stress related caused by my supervisor. Finally I called my OB, described the pains and they wanted to see me that same day. I was losing weight instead of gaining weight. My OB (Dr. David Greenspan) ordered an abdominal ultrasound to check my gallbladder for gallstones. A few days later I had the u/s and sure enough I had gallstones. Dr. Greenspan scheduled a surgical consult with Dr. Petelin (St. Joe’s). During the consult, I was crying the entire time. I was so depressed from work stress and at the thought of going under the knife being 17 weeks pregnant…of course there was the thought that I could lose my baby. :(

I had my 18 week comprehensive/level 2 ultrasound scheduled with perinatologist Dr. John A. Garbaciak (Perinatal Care Associates) for the week after my gallbladder removal surgery, but I had to reschedule for obvious reasons. They were able to see me the day before my surgery. I found out I was having a girl. I also felt her move for the first time that day.

About 2 weeks after my gallbladder removal surgery, I went to see Dr. Greenspan (my regular OB) for my monthly appt. I still hadn’t gained any weight, but I was doing a little better post-surgery. He said my level 2 u/s came back fine, but that I had a Single Umbilical Artery, but that it was nothing to worry about. I immediately worried anyway. What the heck is a SUA? Why don’t I have a “normal” umbilical cord? What could possibly be wrong with my baby? He said that sometimes SUA is associated with birth defects, but that my baby looked fine, so don’t worry/stress too much about it.

Dr. Greenspan said he would schedule a genetic consult with Dr. Garbaciak so that I could ask any questions I had regarding the SUA. I went home that day and cried. Todd also cried. We were worried sick. I immediately got on the internet and started searching for anything and everything I could find regarding a single umbilical artery/2 vessel cord. I became obsessed in finding out everything I could… but it was a crapshoot. It seemed like I had a 50/50 chance of having a healthy baby vs. a sick baby. (it was more like 66/33) (66% chance of having a perfectly healthy baby, 33% chance that there was something ‘wrong’ with my baby). The only thing I knew for sure was that I was at an increased risk of having a baby with a birth defect (usually effecting the heart or kidneys).

I researched for 3 weeks before my appt with Dr. Garbaciak. I had a list of 25 questions I wanted to ask him. I read blogs about mothers who had a SUA. I read the good, the bad, the ugly. One mother’s post in particular had me in tears and scared to death. Her son was born with a problem with his intestines and died within a week of being born.. and it was a result of her having a SUA, which no one informed her of. This mother urged parents to research all they could and to get early intervention if need be.

For 3 weeks, I read about common pregnancy complications for SUA including trisomy 13, 18, 21, heart defects, gastrointestinal tract abnormalities, problems with the central nervous system, lungs, kidneys, musculoskeletal system. I also read that in addition to genetic or chromosomal abnormalities, I had a 20% chance of having a baby with IUGR (intrauterine growth restriction), and the risk of low birthweight, premature delivery, or stillbirth. Talk about STRESS!… Now you see why I was crying for those 3 weeks before I met with Dr. Garbaciak.

I met with Dr. Garbaciack on October 30, 2008. Before my genetic consultation with him, I had another ultrasound (the second performed by his office). The u/s tech said that the baby would not get into a good position for her to take good pictures of the heart. She said she got ‘some’ pictures, but that Dr. Garbaciak ‘may want more’. So Todd and I went in to the elusive Dr. G’s chambers for our consultation regarding the SUA.

Dr. Garbaciak was so nonchalant about my worries/concerns/fears. He was completely unconcerned about the SUA and seemed annoyed at my 20 questions. He cared more about the fact that 1.) I was at a higher risk for having a baby with Down Syndrome and 2.) I was at an increased risk for developing pre-eclampsia again.

He seemed more concerned about those two things, than the original reason I went to see him that day. He said I had a 1 in 450 chance of having a DS baby, but that the only way to know would be to consent to an amniocentesis. I said no way. I wasn’t going to risk losing my baby just to find out whether or not she had DS. I asked him about the pictures of her heart. I said “The u/s tech said that maybe you might want her to take more pics of her heart…”, and he said “everything looks fine/good, I saw what I needed to see”. I asked if he thought I should get an echocardiogram and he said ‘if you want one, Dr. Greenspan can order one for you’.

I had gone to this October 30th appointment with Todd, and I actually told my supervisor about the SUA, because I thought I was going to be getting bad news. I told her that I might not come back to work that day if the appt took a turn for the worse. (Because I knew I had an ultrasound scheduled that day which might have revealed a birth defect.. like uh.. HER HEART maybe?!) I left Dr. Garbaciak’s office a teeny tiny bit relieved about the SUA, and now I was worried about the pre-eclampsia and a DS baby.

One week later I had a follow up with Dr. Greenspan. He said “I got the report from Dr. Garbaciak…everything looks good, but you’re at an increased risk for trisomy 21”, and I said “yeah”, and he said “Do you want me to order an echocardiogram”, and I said “Yes”. I went down one floor (in the McAuley Medical Bldg) to the Scott & Laura Eller Congenital Heart Center. I made my appointment with Dr. Alboliras. Still thinking that everything is fine and I’m just a neurotic worry wart.

Obviously we all know the outcome of that first fetal echocardiogram. WORST DAY OF MY LIFE. I should have seen it coming, but I really thought that everything was fine with my baby. (for more info regarding that day, read below on my blog under “My Story”).

What is not commonly known is that about 2 weeks later (after I knew about Scarlett’s heart defect), I went back to Dr. Garbaciak’s office for a growth ultrasound. The tech didn’t read my chart, didn’t know I was at increased risk for DS or pre-eclampsia, and OBVIOUSLY didn’t know about her heart either. She did the ‘routine’ growth ultrasound making menial small talk with me. She obviously didn’t see the tears streaming down my cheeks when she concentrated on my baby’s heart during the u/s. I asked her when she was done… so everything looks fine/normal?, and she said “yes”. And I said ‘Everything? Even her heart?”, and she said “yes, everything looks good”.

I casually got up (she was finished already), got dressed, picked up my purse and just before I left the room, I told her “I just wanted to let you know that my daughter’s heart is Not Fine. She has a major congenital heart defect and will require open-heart surgery in the first week of her life, and you just told me she is fine and everything looks okay… you might want to read your patient’s charts before you examine them”.

Be assured I never returned to Dr. Garbaciak’s office again, and to this day I have resentment and bitterness toward him and his incompetent staff of ultrasound techs. From that point forward I was seen my Phoenix Perinatal Associates for all my non-stress tests, biophysical profiles and subsequent growth ultrasounds.

One last thing about my wonderful OB, Dr. Greenspan… The day Dr. Alboliras delivered the devastating news to me, he faxed Dr. Greenspan and Dr. Garbaciak the echocardiogram results. That evening at 6pm, Dr. Greenspan called me at home to tell me how sorry he was, that he had just read the report and he had no idea that this would be the outcome. It makes me cry even now how caring he was/is. He said if I needed anything that I could have him paged directly and that he honestly didn’t see it coming and that he was there for me to offer any support I needed. He is such a wonderful and caring man. I LOVE HIM! Dr. Garbaciack on the other hand, also received the same report… and do you think I ever heard from that bastard again? No. Not an I’m sorry.. not an I’m here for you.. nothing. I hate Dr. Garbaciak. 3 ultrasounds (one at 17 wks, one at 22wks, and one at 26 weeks and none of them saw Scarlett’s heart condition.)

Okay, that’s all for now. More to come on Scarlett’s first days in the hospital. Thanks for reading!

1 comment:

  1. Hey Melodie, I had Dr Garbaciak too and he was terrible to me too! When I refused the amnio he told me that if my baby died it would be my fault and that I was a terrible mother. I bawled so hard!! The last thing you want to hear when have a heart baby!
    *I don't have accts anywhere and couldn't just put my name, so i had to put anonymous.*