My name is Stephanie and the following is how I was introduced into the world of Congenital Heart Defects. This is my story but it is also my life.

In May of 2001 I had that feeling you get when you think you could be pregnant so out I went and bought a home pregnancy test. I took both that were in the package just to make sure I was right. Both of them showed two lines. I was so excited even though this was not a planned pregnancy. The following day I called the doctor to have the tests confirmed. Sure enough it was. So as it goes my prenatal care began. I was at that time 6 weeks pregnant. Each month I would go to the appointments and get weighed and checked and get to hear my baby's heartbeat. I didn't know then how beautiful that sound would become. Around 11 weeks I had some pain and didn't know what it was so I was brought in for an ultrasound. I cried through it. Baby was fine and there and moving. So off I went and I was told to relax it was probably a muscle pull.

As I neared my 20-week mark I was scheduled for a routine ultrasound and to measure and check the baby. I wanted to know the sex.

The morning of September 6, 2001 will never leave my memory. I got up, got dressed and left with my mother, son and niece in tow. My husband had started a new job only 2 days prior and couldn't come with me. We arrived at the office and I was a nervous wreck. I had to go to the bathroom so bad. The ultrasound tech was wonderful. I laid down and she asked if I wanted to know the sex, I said yes of course. So the first thing she showed me was the little "hamburger buns" A GIRL! Yeah, that's what I wanted so much. The next half hour she looked at all the vital organs and measured and counted. I never really paid attention to what she was looking at. I was on cloud 9. At one point I saw her type fluid on the screen and just assumed she was making sure there was amniotic fluid in my belly. I left the office with a big smile.

That smile would be short-lived. I had my check up about an hour later. When I got there I was taken right back to the room, which was a little out of the ordinary. My midwife walked in and she just sat down. Now I was scared. She never did that. I saw the paper she had in her hands; it said "Fetal Heart Defect". I just cried. She then told me they were not sure of how severe it was so I would be scheduled to see a specialist for a level 2 ultrasound. I went home that afternoon and just waited for my husband to come home. He walked in the door and I tried to smile and tell him we were having a girl. It didn't work. I broke down and cried. The following day I was sent for my level 2.

I laid on the table with tears pouring out of my eyes as they took their pictures. Finally I was told my daughter had what is called "Hypoplastic Right Heart Syndrome". Big words I had no clue about. The doctor told me he wanted to show the tape to a pediatric cardiologist. I was told to get dressed and I would be speaking with a genetic counselor. I wasn't sure why. Till I met her I had some hope. She brought me into a little room and asked a ton of questions then said, "It is still early enough for you to abort". I wanted out right there and then. I didn't care what my child came out with. It was God's will for her to be with me and I wouldn't get rid of her. I was so mad.

The next few weeks were more routine. I was able to see my midwives for 4 more weeks and then was sent to a high-risk ob clinic. I was monitored twice a week with non-stress tests and once a week by the ob. The doctors weren't as personal as my midwives but they were who I had to see.

My delivery was a much-jumbled mess. I was originally told I wouldn't be allowed to go past 37 weeks. Well I did. I went to 39 and 5 weeks. I was scheduled for induction but Serena had other plans and popped into the world 4 hours before she was supposed to be induced into it.

Now here is my newborn baby girl and they whisk her away to another room and place her in an incubator. I saw her for about a second as they went by. It would be almost four painstaking hours before I would see her again. Her cardiologist came up to see me in my room, which was so nicely not on a maternity unit. (For my own sanity). He explained to us that it was confirmed that she had HRHS and would be transported to another hospital the following day where she would have her surgeries.

On day two of my daughters life she load into an ambulance and transferred to the CICU of Boston Children's Hospital. She was pretty much just monitored that day and was scheduled for a cardiac catherization the following day. After 5 hours in the cath lab she was brought back to the CICU and we were introduced to her surgeon who told us that he wanted to perform a surgery that ran a 10% chance of losing her. This was different then what we were first told. The surgery he wanted to attempt would give her a full functioning heart. That night I don't think we slept at all. We drove home, showered, and got back in the car and drove to the hospital. My mother, father, sister and nephew came with us. I was able to finally hold my baby for about 20 minutes before she went off to surgery. The pictures of that moment tell it all. I didn't know if I would ever see her again.

We were shown to the waiting area where we were updated every hour on her progress. Half way through we were told they were not going to attempt the original surgery and just went ahead and put in a BT-Shunt which would keep her blood flowing the way it had been till she out grew the shunt. About an hour after surgery we were able to go see our sweet daughter. She was hooked to many machines but I looked past them to her. After 4 days she was transferred to the recovery unit where she went home 3 days later. We were told then to prepare to come back two months from then for another cath.

March 21, 2002 we returned to the hospital for them to see how Serena was doing and decide when she would be having her stage 2. After her cath we were told they wanted to attempt the high-risk surgery instead of the Glenn, which would be the normal route. We had to make a decision. It was not an easy one. We were basically choosing between her having this surgery and coming out with a four chamber fully functioning heart or if the surgery didn't work she would have the Glenn anyway. Did we take the chance of it not working and add one more surgery or go the safe way. I had to go with my gut instinct and she was scheduled for her Glenn in May.

May 7, 2002 is a day I will never forget. When they have the first surgery it is hard but once you are able to have your baby home you never want to be separated from them again. We arrived at the hospital and were taken to the pre op area where I had to hand my baby over. If it wasn't for my sister and husband I would have been a mass of mother on the ground. Again back to the waiting area with the updates. Only 3 hrs later her surgeon appeared to tell us she did wonderful. We were able to see her an hour later. By that evening she was off her breathing tube and the following day she was eating again. Only 5 long days after her surgery we brought her home.

It has now been almost 5 months since her surgery and she is a vibrant and cheerful (well sometimes) baby girl. She is chubby and usually always has a smile on her face. I couldn't ask for more then what I have now. She will be having her last (hopefully) surgery between the ages of 2-5 yrs. Till then I will watch my daughter grow and grow. To this day I am very very glad I did not listen to that genetic counselor and that I sought out info from others during my pregnancy. If it wasn't for the support groups I am in and the wonderful people who have now become my extended family a tough time would have been even worse. Thank you for taking the time to read my experience.




2004 Update

It has been almost 2yrs since I last wrote about Serena. Since then she has turned 2yrs old, learned how to walk, talk, climb, and is in the middle of potty-training. Her biggest feat to date though is thate she completed her 3rd surgery.

In April of 2003 we went to have a check-up with the cardiologist and brought up the fact that it was nearing time for the Fontan surgery. This would be the final stage of her "re-routing". My baby was only 15 mths. I thought I had a lot longer to wait but she was showing signs of needing it.

So a cardiac catheterization was scheduled for the last week in July with surgery two days later. We brought her to the hospital for her cath and on the following day we were told to take her home and we were to wait, surgery wouldn't be that week. Serena was doing so well she could wait a few more months or maybe even a year. We chose to wait the few months and got a new date of October 23rd.

So on the morning of the 23rd through an odd snow and sleet storm we drove the hour and half (going about 30 miles an hour, which raked on my nerves pretty bad) to the hospital and at 7:30am I handed the surgical team my litle girl who turned 21 mths old the day before. Ok, so I didn't really hand her over, they sort of had to pry her from me. I wish they had given me the drugs they gave her. The next 5hrs would be the longest of my life so far. But following what Serena normally does she breezed through (with minor complications) her hopefully finale open heart surgery. We had some ups and downs the first few days but my little girl was home to go trick or treating. She didn't get out of the car but wore her costume and she was a little sparkly witch.

Serena today is now 27 1/2mths old and is vibrant and a spitfire of a terrible 2yr old. If you didn't see her scar you would never know that there is anything wrong with this girl. Occasionally she gets blue but I'm so used to it I barely notice. In the future she will go back and have another cath done to close a hole they left in to help with pressure build up. Other then that hopefully no more intervention for a very, very long time.

Serena also will be leaving the family as our baby as she is going to be a big sister in November. Thank you all for taking the time to read about our miracle child that some people had written off as a baby who wouldn't make it. She proved them wrong and then some!