TTTS Parent Stories: Surviving Miracles Mathew & William
My husband Stephen and myself found out that I was pregnant with twin boys when I had my first ultrasound at The Queen Elizabeth Hospital (SA) on February 27th 2003. Due to the QEH being downgraded to single births only I was referred to another hospital which was the Women’s and Children’s Hospital on 4th April 2003. I was 19 weeks.
At this appointment, I was sent for an ultrasound as the doctor thought there might be something wrong. After the ultrasound was done we went back up to see the doctor and that is where my husband and I were told out twin boys were suffering from TTTS and he asked us to see another doctor who specialises in this area and to have it confirmed. After a little while we got into see the other doctor who confirmed the diagnosis after another ultrasound. He explained what TTTS was as either my husband or myself have ever heard of this condition and he explained what could be done. He explained to us that we had 3 options and they were 1. Have an abortion. 2. Watch our boy’s die and 3. Go to Brisbane for emergency laser surgery. The doctor gave us some time to think but I had already made up my mind there and then but I wanted to discuss it with my husband and my mother who was also there the day we found out.
So after a while and a lot of crying we told the doctor that we wanted to go to Queensland to have the laser surgery done. The doctor said the only problem with that is he wasn’t sure if he could admit me into the Mater Hospital or not, but before any arrangements the doctor said her would like to try a procedure where he would extract 1 litre of fluid from my stomach as he couldn’t find the membrane and thought it might help the problem and we might not have to fly up there to Queensland. I agreed to have that done and I had to return to the hospital on the Tuesday where I had to have another ultrasound to see if the membrane was visible in which it was but the doctor still didn’t like what he saw. So it was decided that the best option was a trip to Queensland. So after finalising all the arrangements we were on the 10am flight on Wednesday to Brisbane. But would you believe that this was my first surgery and it was also my husband’s first plane flight.
Anyway once we arrived at the Brisbane airport we caught a taxi and went straight to the Mater Hospital and once there and all the paper work was done I had another ultrasound after meeting Dr Chan and Barbara Soong the midwife. We were once again asked if we still wanted to go through with the surgery once TTTS had been explained once again and what was involved in the surgery. We still agreed to have the surgery if that meant there was a chance of our boys surviving.
So on Thursday night I was admitted to hospital for the operation, which was done at 7am Friday. Once the operation was over I stayed in hospital till Saturday afternoon and had to return to the hospital for an ultrasound about twice a week and everything was looking good. After 3 ˝ weeks my husband and myself returned home to Adelaide and the boys did not like the plane ride home especially the take off and landing they certainly let me know about it. Once home and settled I continued with scans every fortnight and the twins were progressing well and the recipients heart was on the mend to. Closer to the end of my pregnancy the doctor told me that my pregnancy was nearly like a normal pregnancy.
At 35 weeks I went for an appointment with my Doctor and when he did a scan to do some measurements on the twins the one that was head down he got the measurements and check his heart but the other twin was lying horizontal behind twin 1 and the doctor couldn’t find his heart to check it or get any measurements which concerned him a bit, so he sent me to the day assessment unit to have a CTG which is where they put some monitors on my stomach to trace the twins heart beat. I had to have this done twice and once just before I went to see my doctor again. He was quite happy with the results of the CTG’S but still decided that the twins were running out of room and should be delivered.
On that afternoon he made an appointment for Tuesday 5th August for me to deliver my twins by elective caesarean and the placenta was to be sent up to the Mater Hospital so the could study it for their research so they could further their knowledge about TTTS.
On the 5th August I was admitted to the Women’s and Children’s Hospital at 8am for the caesarean and at 10.40am our first twin Matthew Lindsay was born weighing 5lb 9 ounces and at 10.41am my second twin William Douglas was born weighing 5lb 2 ounces. They took them both to the nursery to check them over while the doctors sewed me up. Matthew was the first one to be brought up to me in my room as William was still in the nursery having some oxygen. A few hours later they brought up William to join us. Later that night they took both of them down to the nursery, as they weren’t feeding properly as they were having quite a few spills and William was choking and turning blue as he had food on his lungs. They stayed in the SCUB 1 unit, which is the nursery for babies who need a bit of attention for about a week as they were being feed 4 hourly by a tube that went down their nose into their stomaches. Then they were transferred into SCUB2 unit where they didn’t need much attention. On the Monday after I was discharged but the boys had to stay in for a while longer until they could feed properly. That was the hardest thing I have ever had to do was to leave them at the hospital and go home without them. But they were in the best place and I had a chance to heal and rest before they came home.
On the Friday they decided to put the boys on demand feeds with a four hourly limit. I was breastfeeding them with top ups. I gave up breastfeeding them as I found it hard and I wasn’t producing enough for the both of them. You could say I had the quality but not the quantity. Anyway on the Monday my husband and I were booked into the parenting unit at the hospital for 2 days. The parenting unit is a place were you stay so you can learn how to look after your twins properly and if at any stage you need help the midwifes are only a buzz away. The doctor also comes to talk to you about your twins and there is also a physio that visits as well. The room has beds, sink area where you can bath and change the babies and it also has a shower and toilet. But you do have to share the TV and lounge area as well as the kitchen area but meals are provided. So on Wednesday morning we all were discharged from the hospital.
The first few nights home were tough but once we worked out a routine and how to settle them we were ok. I do admit though we still have our up and downs at night.
The boys had their 6-week check up on Friday 12th September 2003 and the doctor gave them the all clear and he couldn’t hear the heart mummer that Matthew had at birth. He couldn’t get over how William could stand when he was checking his reflexes but her said it is even harder for Matthew to keep his legs curled up than trying to stand.
On Monday 22nd September the boys had an appointment with the cardiologist mainly to check out Matthews mummer. The other Doctor couldn’t hear it but he said that we still should take them to the cardiologist to have him checked out. So we visited the cardiologist and he was very pleased with Matthew he couldn’t hear anything so he said that is good by the said he thinks just to make sure that it has disappeared he wants to see Matthew again in February 2004.
The boys had their first lot of injections and they didn’t like it one bit poor babies. They didn’t have any reactions which is a relief and very thankful for as I was a bit nervous before they had them done as I was worried that they might have a reaction or something.
Both William and Matthew are now putting on a lot of weight and growing very quickly. The other day I had to sort out their clothes and put away the ones that now don’t fit some of them they haven’t even wore and some they have only wore once or twice. The last time they were weighed Matthew 4900 grams and William weighed 4620 grams. They both are the same in length and head circumference. Even though they are identical twins you can tell them apart only because Matthew is bigger than William but they also have their own little personalities and ways for example Matthew will lay on his back where William will lay on his side and sort of arch his back. We are starting to notice a difference in their ways. William does the cutest thing when he cries. I suppose you could say he winds up and the let flies. With Matthew he is sly as he will make out he is upset so you sill pick him up and give him a cuddle you can tell when he is doing that as he has this look in his eyes. William also puts on his sleeping act if you are holding him or he is in his pram when no one is looking he will slightly open his eyes but when you look down at him he quickly closes them and makes out he is a sleep. The other day I was changing William after I gave him a bath and as I quickly turned around to grab his singlet the little devil decided he would wee on me and I had just put on a clean t-shirt but the funny thing was when I looked down William had this huge smile on his face he thought it was so funny.
They both are starting to smile, laugh and talk. They have found out they have voices, hands and feet.
Matthew and William are becoming very strong with their backs and heads and they hold up their heads very well though on is a little stronger than the other.
Everyday there is something new they are both doing. They are growing up very quickly before I know it they will be talking and walking and I don’t think it will be much longer before they get their first tooth.
More and more everyday my husband and I realise that we are very lucky to have both of our boys. It also makes us very grateful knowing that a few weeks after we were diagnosed with TTTS that we would of lost both William and Matthew. What also makes us very lucky and very grateful is when we hear about other parents who have either lost one or both of their twins.
The boys have another check up on 5th December 2003 so I will keep you all up to date on their progress and with letters and pictures.
For those parents out there who have lost one or both of their twins our thoughts and prayers are will you all and the same to those parents who are going though it or who have been through it. We both hope our story gives all of you faith and courage to continue on. If any one of you needs to talk I am here to listen. You can contact Trudy and she has my address, phone number and email address.
Natasha, Stephen, Matthew and William Wright.
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