Jade & Lara by Jo - Australia

TTTS Parent Stories: In memory of Jade & in honor of Lara

After convincing my husband Trevor for six months to have more children. I was overjoyed when on the 27th March, 2001 a home pregnancy test, was positive. I rang for an appointment, to see my GP to get a referral, for the Hospital. My first appointment I will be on the 25th May.

I was feeling very well, working and also being a mother to my four year old Bryce. On the 9th April I had a slight bleed (6wks), I went to the Emergency Department of the Hospital. They checked my blood pressure and took some blood, also had an ultrasound. They had a hard time seeing a lot with the ultrasound, so a vaginal ultrasound was performed, there you could see two yolks sacks but only one heartbeat. I was told that it is quite common and that the other one would probably dissolve, they can anywhere up to three months, but they would have been identical twins. I was told to come back in 7 days for another scan. Leaving I felt shocked ( I had twins, now I haven't). I returned to the hospital seven days later, feeling ancious hopped onto the bed what I saw just blew me away two fetal heartbeats I could see them straight away. I was so excited, I nearly jumped off of the bed. Trevor wasn't with me so I just couldn't wait to tell him. When he came home from work, I waited until he had a coffee and said, I went for my ultrasound today. He asked, how did you go? I paused, and said well we are having twins. ((Shock)) No one else in our family has twins. I could not believe this could happen to me, how lucky I am.

My first appointment came quickly. I was feeling good and getting bigger I knew I was carrying twins. Morning sickness had arrived, nothing seemed to help. I cannot remember feeling like this with Bryce. I asked the doctor if he could confirm I was having twins, but he didn't seem to keen to oblige (I thought maybe because if the possible risk of loosing up till three months of pregnancy), he just said wait for your 18wk scan - everything looks great.

5th July 2001

Feeling excited my sister, dad and husband came in for my scan (18wks). He performed all checks to Twin A (Jade), but when he tried to check Twin B (Lara) all we could see was a little face. I rolled on my side to see if we could get a better look. She was stuck between Jade and the placenta. A Doctor was called in to have a look and then a specialist was paged to see if he could see us. We were told it is Twin to Twin Transfusion Syndrome. I could stop crying as he told us of the complications and high risk he said, there may be a vein or capillary connected in the placenta and that causes problems with getting nutrients to the twins. The tears I cried, I had felt these babies moving since 10 weeks. Dr. suggested aggressive treatment where by they take out the extra amniotic fluid. This will allow Lara to move and also may help produce amniotic fluid into Laras sack. I was advised that I might need to have at least eight procedures. I was booked in on the next day to have my first amnio-reduction. I was not looking forward to it.

6th July, 2001

The amniotic-reduction was the most painful procedure. I was lying on my back for half an hour while they slowly took out 360mls of amniotic fluid. Jade didn't help because she kept on putting her finger over the catheter making the job difficult and more painful. I spent all the next day doing nothing I was worried about miscarriage. Just to get through a day. I had to go in for weekly scans and had, another reduction on the 13th July, this time 530mls of fluid was drained. I only had to have one other reduction on the 16th August, with 750mls of fluid drained. Continued weekly scans. A doppler was not performed as it should have on the 4th September, I was due to have my glucose test on the 7th September, so arranged the doppler for the same day. I didn't think I would be admitted that afternoon. The doppler showed a reversal in the umbilicals.

7th September,2001

Upon admitting, immediately I was given steroids in case the girls were delivered early. I had daily scans and fetal heart monitoring twice a day. We tried to keep them in for as long as possible. The scan I had on he 12th September showed more deteriation and was I scheduled for a cesarean section on the 13th September (28.3wks). Things didn't go smoothly with the anesthetic either. The first spinal didn't work so they tried again, then I had too much . I started to feel faint and sick, my blood pressure dropped and I was numb all I could feel was pins and needles in my finger tips. Everything stopped in the OR. Then I picked up again and the surgery continued.

September 13th, 2001 - two beautiful girls came into the world.


I was crying on the table, after coming so far, to have girls we deeply wanted girls. I went to recovery and was there for a long time because of the anesthetic, and Trev went with the girls to NICU. When I recovered enough I got a ride in my bed to go and see my two girls they are so beautiful, how proud I am, but a bit out of it. Settled in my room, so overwhelmed didn't know what to do. At about 11:30pm a Pediatrician Dr. came in the room I thought they were checking me. But he said we are worried about Jade. She doesn't seem to be doing well, we are doing more tests. I couldn't believe what was being said. Jade had looked to well and she was the big one. (They were worried about Laras, heartrate and reversal that's why I had to deliver early). I said I want to see her. I called Trevor and he came in straight away. It took me half and hour to get to the NICU (Neonatal Intensive Care Unit). When I got there I didn't recognise Jade she was brown and had black spots all over her, she was sedated, on ventilation and had tubes coming out from everywhere. Bellybutton, arms, legs,nose. She looked terrible, but I knew they were doing all they could. They did a cardiac scan and found her heart enlarged and fluttering. For the next thirty hours she is critical. We spent as much time with her as possible, I was very tired and very sore and we tried to rest when ever we could. Early in the morning we saw our specialist doctor on our way up to NICU, he asked how are you, and how the girls are. We told him what was happening, that Jade is critical. The look he gave. He said I'm sorry I didn't know. He rushed off. To see them.

Four times we were called to go to NICU thinking it was Jades last time. One time I held her and all her stats picked up I thought she just wanted me, we put her back in the isolette to keep her warm. But shortly after she went down hill again. Every one step forward had two steps back. We would also see Lara, who was doing so well for the smaller twin. She needed no ventilation, just temperature and air. It was such a hard time, one side of the room Jades fighting for her life, the other side Laras doing so well. You have tears of joy and sorrow. We went back to my room, then at 4.15am on the 15th September we got called again this time it was time. Every time we were called all the nurses knew and would help us to get to the NICU in the quickest time possible, their compassion was wonderful.

On arrival the doctor had just tried adrenalin but that too was failing. She was slipping away. I asked Dr. if there was any hope, he shook his head. We made to decision to take her off of the ventilator. I held her as they removed the ventilator, and she passed away so quickly and peacefully, I knew it was the right thing to do. My Angel was in peace. We held her and cried then I asked if they could take all the tubes off.

We went over to see Lara, the midwife asked if we would like to hold her. They bought Lara out and Trev was cuddling her, when they had dressed Jade they brought her over to us. My two little darlings together for the last time. We had quiet time with Jade I just had to hold her for as long as I could. I always want to remember holding her.

After her passing the hardest job was to ring the family. Everyone was devastated they could not believe what had happened it was a shock to everyone. One day later I am planning my daughter Jades funeral. We had a lovely service on the 20th September. It was very hard, Trev and I had brought some flowers to place on her casket. I hesitate as we walked through the door, to see that tiny little casket. I just wanted to rip open the lid and pull her out. I wanted her in my arms again. We placed the flowers on her casket, a photo of her just next to it. Then walked outside to see everyone. I felt better outside than in. It was a beautiful day sun was shining, rose's in full bloom. Then the time came, we had to go inside again. It was time for her service. I walked through the door, I couldn't take my eyes off of her. I could not believe I was sitting there. All seemed unreal, the service was lovely and I felt strong until the Chaplin read a few short words my husband wrote:-

Dear Little Jade,

You gave your heart for your sister,

We will never forget you little girl,

Love always Mummy and Daddy.

I could not hold onto him hard enough, needed many tissues. We played the song :- Hold me in your arms, by Southern Sons. After we placed a flower on her casket, then moved into the side room for coffee. It was all over, so quickly.

Expressing milk, visiting Lara in NICU, and worry was the only thing we did for the next 10 weeks. Lara needed a blood transfusion, which is common due to their tiny bodies unable to make the bloods cells they need. Arriving to see Lara, I walked through the door one day, and one of the midwives held me up, she said now don't worry. I thought OK. She said now we have had to put Lara on CPAP (Continuous Positive Airway Pressure). She was only on for 2 hours at a time, but didn't take long for her to come off about 2 weeks. She was experiencing trans. braddys. (She forgets to breath momentarily). All you do is move or tickle and she start breathing again. A bit scary. She progressed to SCBU 2, which felt great. What an achievement.

Lara came home on the 18th November, two weeks before her due date. She was on oxygen and two gavage feeds.

Lara is now nearly 10 months and such a beautiful and happy baby. She has the biggest, sparkling blue eyes and a smile that would melt you. What a perfect living reminder of Jade.

My story is one of many stories of this horrible syndrome, and I hope by me telling it people might be more aware of Twin to Twin Transfusion Syndrome and it's mortality.