Jennifer Gwen
Jennifer Gwen's Story
On the 11th of October 2006 I gave birth to my baby girl Jennifer Gwen.
Approximately 2 days earlier she lost her fight and her life with a monster called a Sacrococcygeal Teratoma.
My baby girl was still in my tummy; I was 27 weeks pregnant.
Our journey started on the 2nd of May 2006 when I did a pregnancy test and it was positive, a very happy day. All seemed to be going well aside from the very regular bout of morning sickness.
At week 18 of our pregnancy we had a routine ultrasound scan at my local medical center. We were so excited to see her again although we didn’t know we were having a girl at this stage. We hadn’t had a scan since week 9 and I was excited and looking forward to seeing her hands and feet and her beautiful face at that point we had decided not to find out what sex our baby was.
Our sonographer showed us our baby’s hands and feet moving around and bubby seemed fine she was moving around and having a ball but then the sonographer picked up something that shouldn’t be there. She had concern on her face and we became very worried she discovered a soft mass on our baby’s bottom, she wasn’t sure what it was, she had to talk to our GP.
The next day we were due for a regular check up with our GP but before I even got there I got a phone call from our GP telling us that he was concerned as to what the mass was and he immediately made an appointment at the Mater Hospitals maternal fetal unit the following Friday, a week away, we really started to freak out.
We went to our scheduled check up the day following the ultrasound to find out if anything what was going on. Our GP said it was a solid mass growing from what it looked like our baby’s coccyx or tailbone and that was really all he could tell us. We had to wait until we saw the specialists at the Mater Hospital in Brisbane a 3 and a ½ hour drive from our home in Goondiwindi Queensland.
That week all I could think of was what was wrong with our baby. We didn’t at that point have a name for what it was so I couldn’t look up anything or find out anything about it, it was a very stressful week.
On the 18th of August we had our appointment at the Maternal Fetal Medicine Unit in Brisbane I was 19 weeks and 4 days pregnant.
The ultrasound was done and then we were ushered to a consulting room to find out what was going on.
First we spoke to our Doctor who told us what was happening to our baby. It was called a Sacrococcygeal Teratoma (SCT). This Teratoma affects one in 35-40,000 babies it is described as a mass of cells and cystic fluid that don’t form properly and can attach itself to an area of the fetus and grows, usually it attaches to the sacrum or coccyx but can turn up anywhere in the fetus. It can grow slowly and with the baby and the baby can survive, it can also grow faster than the baby and can cause the baby’s heart to grow too large as both the baby and the Teratoma compete against each other for the blood needed for both the baby and the Teratoma to grow.
Our baby had a type 2 SCT that means it has an internal portion and an external portion. It measured at that stage 4.75cm (external) and at that point the doctor said it was considered a ‘good size’. To us though any size was horrible we just couldn’t believe something was wrong with our baby. We went on to speak to a pediatric surgeon and a neonatologist who informed us on what would or could happen to our baby.
We were also spoken to about our choices. This was of course the decision on whether to continue the pregnancy. I am I guess a pro choice in this area and I do not judge people on the choices they make, they do as they believe the best for them.
My big worry was the mental development of our baby, I could handle any physical aspect of this problem but I wasn’t sure I could handle any mental insufficiencies. We were offered an amniocentesis and I agreed to have it done.
During the waiting to have the amniocentesis my partner and I did a lot of talking we had made up our minds that we will leave it up to nature and if bubby didn’t make it, as hard as it would be, then that was what was supposed to be we are not religious people so we left it up to what the world wanted all we could do was love our child and hope that that was enough. We just couldn’t make a choice to end a life when in all possibilities our baby could very well survive and go on to lead a normal healthy life so by the time the amniocentesis was due the results of which were void to us.
We did find out that day we were having a girl. Jennifer Gwen she would be her name.
We left that day feeling completely overwhelmed and emotionally drained but informed. It would be 4 weeks until our next appointment.
The next 4 weeks were full of worry, hope and tears and as my tummy grew I fell more and more in love with our baby girl, our Jennifer.
In my heart I wasn’t sure what would happen. A part of me I guess knew she wouldn’t come home. There was also a huge part of me that just couldn’t accept that she may not sleep in the cot we restored for her or that I may not change her nappy on the change table we also restored for her. It was inconceivable that the baby I was carrying wouldn’t come home and I wouldn’t ever hear her cry or laugh or feel her baby soft skin.
4 weeks had passed and we were again in the car for the 3-½ hour trip to the city to see how our bubby girl was doing.
Now I was 24 weeks and 1 day pregnant.
We had the scan and the Teratoma had grown, a lot. Again we were taken into a consulting room. The sonographer came in to tell us we had an appointment the following week. I knew something was very wrong as we thought our next appointment was another 4 weeks away I looked at our Midwife confused. At this point the tears flowed and we were devastated the Teratoma was growing faster that expected.
A few days after we got home we received the report from our doctor. The internal portion of the SCT measured 5x4x4 cm and the external portion measured 8x8x7cm, the doctors didn’t hold out much hope for her. Her heart had enlarged and also had fluid in it and it looked like she would develop the Hydrops condition. I called our Doctor and asked him if in fact she was hydropic at that point and he said no so to us we still had hope, plenty of hope.
The following week was my 35th birthday and our next appointment was the day after.
My birthday was spent at my mother’s house as we always stayed there the night before our appointments. My partner Adrian was determined to give me a perfect birthday with our little girl just in case I wouldn’t get another birthday with her. He cooked an awesome meal for my family and bought me a present even though we couldn’t afford it. My birthday was perfect; the time spent with my family and our little girl was so needed.
The following day was probably our worst to date. We were due at the hospital for an ultrasound then we had to go to another hospital for an MRI.
Over the following weeks we continued the long weekly drive to the city to see how our little girl was doing. The doctors, the midwives, as nice as they were I was sick of seeing them and just didn’t want to be there.
There was a night that we stayed an extra night in the city and we stayed in the hospital accommodation. That night we cried and talked and got angry and cried some more. The time in the motel was good for us if not the worst time yet. We had a chance to do a lot of talking and I guess it was the first part of our accepting that our little girl may not come home and I guess we started our grieving process that night.
Week 26 had arrived and again we were off to the city for our scan. We were so tired. After our scan we asked the doctor if we really needed to be there the following week as we were so tired and would appreciate a week off the long drive, he said it was fine as long as I went to my antenatal clinic in between visits.
On Monday the 9th of October something was happening. I was standing at my kitchen sink and felt a lot of pain. I went to have a shower. I was so upset that I cried a gut-wrenching cry and told our Jennifer that if she couldn’t fight anymore that it was ok for her to go.
The next morning I went to my antenatal clinic for my check up and found that our Jennifer Gwen had said goodbye. Our GP couldn’t find her heartbeat and although he got a second opinion from our town’s sonographer I knew that she had gone.
Our baby daughter just couldn’t fight the Teratoma anymore the tug of war between her heart and the Teratoma got too much and the Teratoma won. The last ultrasound we had the SCT was 8x8x7 internal and externally measured approximately 8x10x10.
Jennifer developed Hydrops her tiny heart grew to the size of her chest and just got too big to work any more.
We drove to Brisbane to the Mater Hospital where I gave birth to Jennifer Gwen on the 11th of October 2006 at 11:49pm. It was the single most traumatic yet beautiful experience of my life. I wanted a cesarean but the doctors insisted I give birth to her naturally as it is part of the healing process I was angry at the time but the moment she came into the world I was grateful that the doctors didn’t give in to my need to have a c-section.
My partner Adrian and I spent the next 12 hours with our daughter. We held her, we took photos of her we cried for her and we loved her. Letting her go and leaving the hospital knowing I would never see her again was so hard.
We had a funeral for her so the two of our families and us could say good-bye, then we went home, without our little girl.
The healing process has been indescribably hard we miss her everyday and still ask the question, why? Why would we be given a beautiful little girl only to have her taken away from us before we got to know her? That question will never be answered and I for one am still very angry.
Our little Rainbow Angel will never be forgotten and will always remain number one in our hearts.
Keryn and Adrian
Mum and Dad to Jennifer Gwen who became our rainbow angel on the 11th of October 2006.
Thank you for reading our story.
< previous
