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A Tale of Grace

Stacey Kale shares with us her story of her time spent in Starship with her newborn twin girls and all of the emotions that came along with it.. 

Words by Stacey Kale

Photography by Ash Photography NZ

A little after our son Mason turned one, we found out we were expecting. My doctor was overjoyed to tell me, hoping that I would take the news well. He booked a dating scan and a follow up appointment with him - he knew from the beginning it was twins but wanted to see my reaction in person.

He has been my doctor for years and helped me through battles which meant children were not a guaranteed part of my future. We were over the moon.

At our 20 week anatomy scan they spent around 3 hours getting measurements. We got a phone call that night; they missed some measurements and asked me to go to a senior radiographer to get them the next morning but they assured me everything was fine. So the next day I went alone. As soon as I walked in I was told something was wrong.

The obstetrician said the girls were showing signs of Twin to Twin Transfusion Syndrome, but it was so rare so to try not to worry. They booked extra scans, just to be extra cautious.

TTTS is a disease of the placenta that affects identical twins who share a placenta. The placenta is unevenly shared, so one twin may not get the necessary nutrients to grow or even survive. Blood can be transfused disproportionately from one twin, the donor, to the other, the recipient. The donor twin has decreased blood volume, therefore slower growth compared to its co-twin, and poor urinary output causing little to no amniotic fluid. The recipient twin becomes overloaded with blood, which puts a strain on this baby’s heart to the point it may develop heart failure, and too much amniotic fluid.

We had chronic TTTS which appears in early pregnancy between 12-26 weeks gestation. Without treatment, most babies do not survive and of the survivors, most have handicaps or birth defects. For some reasons our 16 and 18 week scans never took place, despite me questioning the OB team. I displayed all the symptoms but it was missed by the Drs. Early detection is critical for the best outcome for TTTS.

I underwent laser ablation surgery and a fluid reduction at Auckland Hospital. Before surgery I insisted on naming the girls. Just in case we lost one or both of them, I wanted them to be named. I needed it. We named our recipient twin, our twin one - Amelia and our donor, twin two - Grace. The surgery went well. They drained 3L of fluid from around Amelia.

A scan the next day showed that Grace had developed hydrops fetalis due to her heart needing to pump a much greater volume of blood to deliver the same amount of oxygen. She had edema, fluid around her brain, her heart, and abdomen. She was showing signs of heart failure. We were at stage 4.  All we could do was hope and wait.

If we went into labour prior to 23 weeks that would be done in Hawkes Bay and our babies would not be viable. A risk of the surgery is preterm labour. After 23 weeks we would have to have the girls in Auckland Hospital. This gave me comfort because I had faith in the maternal fetal medicine team there and being at Starship was the best place for the journey we had ahead of our family.

My waters broke in the hospital at 27 weeks 1 day at 3am.  I was petrified. I remember crying to the midwives that it was too early.

Simon came up and we were taken into theatre and a huge team was assembled. The head of NICU was called in, cardiologists, it was all hands on deck. The theatre team was amazing at trying to keep us calm and upbeat. They played music and joked around with us. I went from moments of laughing to crying silent tears not knowing what to expect next.

Grace was born first at 5:58am weighing 1300g they rushed her to another room to get her breathing, she was very swollen from the hydrops. Amelia came next at 6:00am weighing 880g. I don’t remember hearing any crying. I lay there not knowing what was going on, if they were ok. I was trying to keep it together. To take in any pieces of information I could hear. Someone came over to ask if Simon wanted to see Amelia, his face when he came back was something else. He’s not much of a crier, but there were tears in his eyes and all he could say was that she was so small. A while later they asked if he wanted to see Grace, but he was hesitant, I made him go saying that I couldn’t go and see her and he had to incase something went wrong. He said he didn’t want to leave me but I needed him to go to her.

He came back smiling, he said she was looking good, much bigger than Amelia, maybe he knew what to expect after seeing her. The next hours were a blur. I don’t remember when I got to see the girls, I think they wheeled me in on my bed to see the girls on the way back to the ward but I honestly don’t know. Three babies and I’ve never seen one or held one right after birth. Now I had three babies under two.

The first time Simon wheeled me down in the chair to NICU I was petrified and felt so out of place. I didn’t know where to stand or what to do. My babies were so small and fragile with wires and tubes everywhere. The nurses had to show us how to touch the girls in a way not to damage their delicate skin. They explained what the monitors all meant and what medications they were on. I felt like I was in a foreign country. Grace was one of the sickest babies they had at the time. The cardiologists said she was in the top 5 of the country in terms of concern for her, they had all been talking and preparing for her arrival for weeks, thinking about what they could do and when.

During our NICU stay both girls had many ups and downs. Blood transfusions, infections to fight, lumbar punctures, making gains and then going back down again. We had to learn to ‘care’ for our girls. How to change the nappies in the incubators, how to wash their eyes and clean their mouths. Pumping every 3 hours, 24/7. Learning how to draw up milk and medicine and use the feeding tubes. Light therapy. All sorts. Our lives felt like they were in compartments. We felt like we had the twins in hospital and Mason in the real world. For a long time, it didn’t feel like we had 3 children.

On day 5, Amelia was well enough for her first cuddle. I was so scared I was going to hurt her, or a cable would drop out, and managing the CPAP headgear. But it felt so good to hold her close. On day 16 I finally got to hold Grace. She was still intubated and had been heavily sedated for her first few weeks to keep her comfortable. That cuddle was worth the wait.

 

Over time it became easier. NICU became my home. I spent my days in the cares, pumping and cuddling routine. I was able to get the girls up once a day for 1-3 hours as long as they were well...and the nurses let me.

We got to have the girls close to each other at 6 weeks when an amazing nurse manipulated our NICU room to get the girls as close as possible when we had some photos done. She pushed for the other nurses to make this happen especially in the lead up to Grace’s open heart bypass surgery.

Grace had this surgery when she was 8 weeks old and finally weighed 2kg, there was a massive risk in the surgery but her heart was no longer in a place where we could wait any longer. That was the worst time of my life. I had Mason at home here in Hawkes Bay, Amelia in NICU and Grace in PICU fighting for her life. Once they closed her chest a few days post surgery things went really bad for her and they didn’t expect her to last the night. They called the surgeon back in around midnight, made calls to the head of PICU. But once again, she defied all odds.

Grace has complex acquired heart disease, the right side of her heart is smaller than it should be. She has severe right ventricle dysfunction, dysplastic tricuspid valve and pulmonary valves, had a muscular VSD, a hole in her ventricle which seems to be closing as she grows, and the ‘muscle wall’ around her heart was thickened. They were able to address some of her issues in her first surgery, adapting her pulmonary valve, closing her PSD and creating a hole in her atrium to help her get oxygenated blood between the chambers of her heart. Some of the issues will require further surgeries throughout her life - all which will be done at Starship Hospital, even through to adulthood.

The NICU nurses would volunteer to bring Amelia down for short visits daily, which helped me get through. We finally got to see the girls lay next to each other in a bed. Amelia was doing so well and Grace was facing such big battles. Grace’s oxygen saturations would always go up with Amelia close by.

Just before Christmas the girls were back together, Simon flew home to bring Mason back up and we got our very first family photo when the girls were 10 weeks old.

A few weeks after that we were transferred to our local SCBU, after 3 months in Auckland. I couldn’t fathom how hard it was to leave Starship. It becomes your safe place. A place where you know your child/children are getting the very best care in the country. I had to hold back tears on the Starship Air Ambulance. Two nurses accompanied us home, one was the first nurse we had in NICU. It was another month before we all got to be at home together.

Both girls came home on oxygen. Both have extreme chronic lung disease due to being so premature. Grace had her heart issues, Amelia has a narrowing of her aortic arch which causes blood pressure issues which we keep an eye on. Amelia got off oxygen at 5 months actual and Grace at 14 months actual but recently has become hypoxic where her body is being deprived of adequate oxygen so is back on night time support. If Grace gets too upset, because the way her heart is plumbed, she can go blue. Grace also has spastic cerebral palsy as her brain was damaged during her early days and post heart surgery, she is still learning to stand and walk independently. It’s been a massive learning curve managing two babies with health issues.

We still have to be very careful with exposure to anyone who is sick and spend most of our winters housebound. The girls have a weakened immune system and have only started being able to manage a common cold. We have thousands of pages of medical notes, it doesn’t end after NICU. Even now, if Grace needs a general anaesthetic, we have to go back to Starship so they can manage her heart and oxygenation issues safely.

It strangely feels like coming home. Many medical mamas agree, even though it's heartbreaking to have to be in hospital with your little ones; you know that is the place you can breathe a bit. Almost anything that needs to be done can be accessed in moments from life saving surgery down to schooling and access to play therapists for patients and their siblings. The staff are the best of the best and the way they care for anyone who walks through those doors...I honestly don’t have words to describe it.

 

 

 

 

 

 

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