Faces of Loss, Faces of Hope

Danielle
Mom to Harley Elizabeth 
Born June 24th, 2009 and Died August 10th, 2009

Coral Springs, Florida

Twin to twin transfusion syndrome or TTTS is a disease of the placenta that affects only identical twins sharing a placenta...this is Hannah's and Harley's story.. 

Chris and I found out we were pregnant 28th of Dec 2008..We were not planning it but we were very happy!!! Our first sonogram was the first week of January and since fraternal twins run on both sides of the family we knew at least that kind of twins were possible (Chris has a twin sister as well) the sonogram tech assured us that there was only one baby one heart beat. When I was 12 weeks I had an apt with a perinatologist ,the tech put the wand on my stomach and after a few minutes said, there's 1 and there's the other-- I said "other what"? she said other baby!!! i said "what other baby"? she said 'oh you didn't know you were having twins"?  I told her matter of factly "does it look like I know I was having twins???  This I regret saying every day and wish i didn't freak out as much as i did.  After the scan the doctor talked to us about all the twin things that can happen and confirmed that they were identical sharing a placenta.  She told us of TTTS and said, but don't worry about it its very rare, it probably won't happen but we have to tell you about it.

Boy was she wrong-- 3 weeks later I was seen by a world renoun fetal surgeon at Miami Jackson Memorial Hospital.  I was diagnosed with stage 3 TTTS and was sceduled for surgery to stop the "sharing" the very next morning not knowing if my girls would make it.  We had doubble everything...  I immediatley told everyone to stop buying anything..my mom of course didn't listen and came home with one more round of double girl outfits about 3 weeks after my surgery....but this is what happened after the surgery.

At about 14-15 weeks I thought I had a very bad bladder infection.  I work as a pastry chef and I was in a lot of pain b/c I constantly felt like I was going to wet myself and as soon as I would go to the bathroom it would be a drop and a second of relief then right back to feeling awful.  I could hardly walk.(this later i found out that was b/c harleys sack was so big b/c she was the recipient thats how they think she got her heart problem her body being overwhelmed with blood and fluid but they can't say 100% it caused the heart problem so for all future pregnancys i will be high risk with fetal echo's until about 5 months along )  I was diagnosed with TTTS at 17 weeks 4 days, and the very next day I had the laser ablasion surgery with the doctor at Jackson Memorial in Miami.  They also found the day I was diagnosed that Harley's heart had a problem,she had regurge(backflow of blood) on the right side of her heart b/c the valve that lead to the lungs from that side of her heart was completely blocked (pulminary atresia) and the right side of her heart was getting thick and wasn't growing like the left side was.  Hannah had 25% bloodflow she had no bladder on ultra sound and was shrinkwrapped in her sack and wasn't moving they didn't think she would make it.  I was at a stage 3. 24 hours after surgery we did the nerve racking ultrasound and we had 2 heart beats they both survived! :0) .   

I was put on moderated bed rest and was followed by my perinatologist and a fetal cardiologist at Jackson with fetal echos for Harley.. her heart started to get worse so i wanted the in utero fetal heart surgery.  The board took over a month to allow it b/c of ethical issues b/c of twins.  The day my surgery was approved I was at Jackson Memorial for "dry run" sonograms about 5hrs worth.  The doctor noticed I was having contractions.  I didn't feel them at all-- he wouldn't allow me to go home and my surgery was obviously canceled.  I went home a day later and a day after that I was back with contractions again... I was sent home on a terbutaline pump in my leg and a contraction monitor twice a day and strict bed rest...I was 26 weeks pregnant.  Every week after that i was in the hospital for 3-4 days on magnisuim sulfate(worst stuff on earth) the last time I went in I was effaced and dilating then they did a sonogram right away and saw Hannah cut herself off from the placenta...

20 min later they were born.  I was 30 weeks 6 days pregnant..Hannah was 2# 3oz and Harley was 3#.  They tried Harley's heart cath surgery but she had developed a blood clot in the left side of her heart (which also caused her cath toes which would have been removed almost all her toes on her left foot) b/c she had pulminary atresia they had to use a stiff cath.  They also had to go in on the right side of her heart as to not disturb the clot on the left they couldn't get the cath to where it needed to go without piercing her heart so it was unsuccessful. 

Our next game plan was for her to stay on the prosten( a medicine to keep a valve open only in utero open she was on it since birth) she had to get to 5# for open heart surgery to open that valve. She was serious but stable for 2 more weeks eating the breast milk and gaining she was at 4#7oz.  Then they were switching her between the vent and the cpap and she somehow got septic( i still do not understand how she was in isolation).  It killed some of her bowels so the next step was get her stable get her to surgery to see the damage.  She then went into renal failure but briefly came back from it...then her pulse ox stats were in the 30's all day which caused brain damage and seizures..she was getting blood products all day long and was bleeding from everywhere but her ears..she was swollen from the renal faliure and it was horrific to see her.  Chris and I couldn't make the decision to stop but we prayed that god would now give us a little bit of mercy and take her on his own so we wouldn't have to live with that kind of decision.  I got to hold her for the first time the day before she died. She was very very heavy it took 7 nurses to situate her and hand her to me, she was bagged while i held her. As soon as I got her, her heart rate dropped to 80 and the dr asked me if i wanted to continue to hold her or put her back and allow them to stabalize her( we had asked for a dnr so that if god wanted to take her modern medicine wouldn't stop it) i said no it was my only chance to hold her.  I didn't want her to pass in my arms but I didn't want to give her up either...amazingly she stabilized herself..I was left alone except for a few nurses,dividers were put up for privacy and I just sat with my little girl that I had fought so hard for..I told her how much I loved her and how hard I fought,they thought she wouldn't make it through the day a week before, but I had sat with her the first day she was really sick for 5 hrs and told her to fight and win and she amazed everyone by living a whole nother week.  I thanked her for her sister b/c Harley was baby A and we like to believe that she knew she couldn't stay so she copied herself and made Hannah baby B so that Chris and I could have a child and not be left with nothing.  

I promised her I would be ok , and that it was ok to go that she didn't have to fight anymore and how happy i was that she fought so hard for me, just as i had done for her... I never in my wildest dreams thought she would actually die, I thought we'd have heart surgerys and she'd have to take it easy and we'd have to be careful with her which we would have taken on no problem, but it just suddenly got so bad and before we knew it she was beyond reach, beyond help.  She was baptised the week before and we called the same reverand to give the prayer of the sick and that day she got it. We went home depressed and destroyed.We got the phone call the next morning at 6:40 am that she had passed-- it was August 10, 2009.  She was 47 days old and the strongest little fighter ever.....
 

You can contact Danielle at Danielle.poletti@gmail.com