- C
- m
- A
On the 16th of May 2015, 11 days before my birthday, I was having my 18-week scan, and I was excited to find out what we were having. We found out we were having a girl! As happy as we were, I just wanted to have a healthy baby!
After we found out, the doctor doing the scan continued with saying that our baby’s head, spine and so on were normal, but she said, “Your baby is missing fingers on one hand, and at this stage it looks like she only has a thumb.” I was shocked! The lady continued, “there is also something wrong with your baby’s legs. Her thigh bones are very short, and one leg is longer than the other.”
Our baby was missing her fibulas in both legs, missing toes on both feet, and both of her tibias were bowed.
As I was being told all of this, it was like hearing white noise ringing in my ears along with the sound of myself breathing heavily!
The doctor told me I have some “options”, such as one in particular that hit me hard – termination! I balled my eyes out when I heard this! And then I thought, “What do I do? Where do I go? Whom do I talk to?” I just couldn’t bare to think that this was happening to my baby – my baby – what did I do wrong?! I started to blame myself, as all mothers would do in a situation like this.
The doctor told us that the Royal Brisbane Hospital would call us in a couple of weeks to do another scan, to see what they come up with. It was the longest 2 weeks of my life!
Before I went to the hospital, I said to my partner, “I’m having this baby! No matter what anyone else has to say, I’m fighting for her!”
I haven’t told anyone this, but then I was alone with my little girl in my belly, I would talk to her and tell her that I love her. I’d tell her, “There are so many people out here that love you and can’t wait to meet you”, and that it didn’t matter what was going on with her, and that I would love and care for her till the end of my days and beyond! She was everything that I longed for – my dream come true.
After the 2 weeks went by, we headed to the RBH. They did the scan and confirmed what we already knew.
They continued to tell us that our baby’s right hand had only 1 thumb and 2 other fingers that were joined together. They also said she may have dwarfism, so they wanted to do a MRI and an Amniocentesis (or AFT).
I decided against the AFT because sometimes they can cause a miscarriage, which we didn’t want to risk. And MRI’s haven’t been proven to be 100% safe while pregnant, so we didn’t want to risk that either. So the hospital wanted to see me again in 6 weeks; then again in another 4 weeks; then again in another 2 weeks. After all that, the doctors still had no idea what was going on! So my antenatal care got transferred down to the RBH.
When I was 31 weeks pregnant, on the 15th of August 2015, my partner and I got married. Then the next day on the 16th of August, I had my baby shower because we had friends and family travel interstate from WA and NSW, so we thought, “Let’s make a weekend of it!” But on my baby shower day, I spent most of it in hospital because my blood pressure was oddly high, which we were worried about.
The next day, Monday the 17th of August, I had an antenatal appointment at the Royal Brisbane Hospital. The results were worrying, so the doctors kept me in there for 3 days because of my blood pressure. Then shortly after, they found out that I had Obstetric cholestasis, which apparently affects your liver and can harm you if not treated.
So I got out of hospital for the weekend but then on Monday I had another antenatal and my blood pressure was high again, but not high enough to keep me in hospital, so they finished their tests and sent me home, but on the way back, I started getting really bad pains. So we called in to the Caboolture Hospital who confirmed that it was Braxton Hicks contractions that I was having. While I was there, I got a call from my doctor at the RBH telling me that I needed to be admitted to the RBH because I had preeclampsia, and from 14 weeks I had gestational diabetes. Despite having a lot going on with me, our baby girl was well and healthy, and that was the main thing.
From the 24th of August 2015, I had to stay in the Royal Brisbane Hospital for weeks, which started to do my head in! Some nights I would cry myself to sleep, hoping everything would be okay, and with only seeing my partner 2-3 times a week, it only made it harder. But I knew it was the best place for me and the baby to be, and on the plus side, the food was pretty good!
A few days before the 11th of September 2015, I felt like my belly was growing by the second! Then on the 11th, I told my doctor I couldn’t feel the baby as much, and I started crying! The doctor sent me for a scan straight away. Our baby girl was fine, but my amniotic fluid had double in just two weeks! This condition is called Polyhydramnios, where basically it was like the baby was swimming around in my belly!
At this stage of the pregnancy, I was 35 weeks along, so they prepped me for a C-section, and at 3:16pm on Friday the 11th of September 2015, our beautiful baby girl was born, Dylan.
When she didn’t start crying, I was so scared that she wasn’t breathing! So they started breathing for her while she lay on a bed with lights and doctors all around her. Then from the operating room to the special care nursery, she was doing fine. And while I was in recovery, my partner brought me a photo of Dylan and I instantly fell in love with her! Once I was well enough to head back to the ward, they took me to see Dylan where they put her on my chest. She was so beautiful I just wanted to cry!
When Dylan was born, she was 6 pounds 1 ounce and 36cm long – most babies are around 50cm. And when I got up to check her out, you could tell she had something wrong with her legs.
I got out of hospital a few days later on Tuesday the 15th of September, and got a room at the Ronald McDonald house – what a great place! And on the Friday, Dylan got transferred back to Caboolture Hospital because she was doing a lot better. She stayed at Caboolture Hospital for about a week until she was feeding from bottles because she had only been tube-fed from birth in the 2 weeks she was in the RBH.
While she was Caboolture Hospital, we were meeting so many doctors and people wanting to take photos and what not of Dylan that it was hard to leave her at night. I would stay with her until I couldn’t keep my eyes open any longer! I just wanted to stay and cuddle with her and tell her that mummy was here!
First thing one morning when I got to the hospital to see Dylan, doctors told us that she has skeletal dysplasia, bilateral fibular hemimelia, hip dysplasia, proximal femoral focal deficiency and partial agenesis of the corpus callosum.
Within the first 8 months of Dylan’s life, we had found out all of this! Doctors from Lady Cilento Children’s Hospital (LCCH) have also sent off Dylan’s DNA overseas because they believe she may also have a condition called fuhrmann syndrome. There is however a minimum 3-month-wait before we get the results from the DNA sample that was sent off on the 5th of April 2016.
Dylan currently requires occupational therapy, sees a physical therapist, hand specialist, limb deficiency clinic, orthopedic specialist, pediatrician, ENT (ear, nose and throat) specialist, and she will need to start receiving speech therapy soon when she is 15-18 months old.
She will also need to get surgery on her hips in September 2016, but first she will be seeing a specialist from the USA, Dr. Paley, to see what options Dylan has. Dr. Paley is the Number 1 specialist on limb lengthening, so we are hopeful that he’ll be able to help, but each surgery that Dylan requires is going to cost about $200,000 – and she will need about 3-8 surgeries in her lifetime!
Either way, we have no idea what other treatments Dylan may need in her lifetime, but we have been told that she will either be in a wheelchair, or she’ll need to have prosthetics, or she’ll need the limb lengthening surgery in America which is going to give her the best outcome to have a more independent and fulfilling life.
In terms of the help we’re getting now for Dylan, we’re only getting some help from Montrose, who see Dylan every month for her occupational therapy and physical therapy. And because we have appointments almost every other week, it’s hard for me to get back into the workforce to try and help my partner make ends meet, who is currently working full time and overtime.
So please, we’re asking for your help! Anything you can give or any amount of money that you can donate for Dylan to help towards her future surgeries, treatments and appointments, we would greatly appreciate. Thank you.
After we found out, the doctor doing the scan continued with saying that our baby’s head, spine and so on were normal, but she said, “Your baby is missing fingers on one hand, and at this stage it looks like she only has a thumb.” I was shocked! The lady continued, “there is also something wrong with your baby’s legs. Her thigh bones are very short, and one leg is longer than the other.”
Our baby was missing her fibulas in both legs, missing toes on both feet, and both of her tibias were bowed.
As I was being told all of this, it was like hearing white noise ringing in my ears along with the sound of myself breathing heavily!
The doctor told me I have some “options”, such as one in particular that hit me hard – termination! I balled my eyes out when I heard this! And then I thought, “What do I do? Where do I go? Whom do I talk to?” I just couldn’t bare to think that this was happening to my baby – my baby – what did I do wrong?! I started to blame myself, as all mothers would do in a situation like this.
The doctor told us that the Royal Brisbane Hospital would call us in a couple of weeks to do another scan, to see what they come up with. It was the longest 2 weeks of my life!
Before I went to the hospital, I said to my partner, “I’m having this baby! No matter what anyone else has to say, I’m fighting for her!”
I haven’t told anyone this, but then I was alone with my little girl in my belly, I would talk to her and tell her that I love her. I’d tell her, “There are so many people out here that love you and can’t wait to meet you”, and that it didn’t matter what was going on with her, and that I would love and care for her till the end of my days and beyond! She was everything that I longed for – my dream come true.
After the 2 weeks went by, we headed to the RBH. They did the scan and confirmed what we already knew.
They continued to tell us that our baby’s right hand had only 1 thumb and 2 other fingers that were joined together. They also said she may have dwarfism, so they wanted to do a MRI and an Amniocentesis (or AFT).
I decided against the AFT because sometimes they can cause a miscarriage, which we didn’t want to risk. And MRI’s haven’t been proven to be 100% safe while pregnant, so we didn’t want to risk that either. So the hospital wanted to see me again in 6 weeks; then again in another 4 weeks; then again in another 2 weeks. After all that, the doctors still had no idea what was going on! So my antenatal care got transferred down to the RBH.
When I was 31 weeks pregnant, on the 15th of August 2015, my partner and I got married. Then the next day on the 16th of August, I had my baby shower because we had friends and family travel interstate from WA and NSW, so we thought, “Let’s make a weekend of it!” But on my baby shower day, I spent most of it in hospital because my blood pressure was oddly high, which we were worried about.
The next day, Monday the 17th of August, I had an antenatal appointment at the Royal Brisbane Hospital. The results were worrying, so the doctors kept me in there for 3 days because of my blood pressure. Then shortly after, they found out that I had Obstetric cholestasis, which apparently affects your liver and can harm you if not treated.
So I got out of hospital for the weekend but then on Monday I had another antenatal and my blood pressure was high again, but not high enough to keep me in hospital, so they finished their tests and sent me home, but on the way back, I started getting really bad pains. So we called in to the Caboolture Hospital who confirmed that it was Braxton Hicks contractions that I was having. While I was there, I got a call from my doctor at the RBH telling me that I needed to be admitted to the RBH because I had preeclampsia, and from 14 weeks I had gestational diabetes. Despite having a lot going on with me, our baby girl was well and healthy, and that was the main thing.
From the 24th of August 2015, I had to stay in the Royal Brisbane Hospital for weeks, which started to do my head in! Some nights I would cry myself to sleep, hoping everything would be okay, and with only seeing my partner 2-3 times a week, it only made it harder. But I knew it was the best place for me and the baby to be, and on the plus side, the food was pretty good!
A few days before the 11th of September 2015, I felt like my belly was growing by the second! Then on the 11th, I told my doctor I couldn’t feel the baby as much, and I started crying! The doctor sent me for a scan straight away. Our baby girl was fine, but my amniotic fluid had double in just two weeks! This condition is called Polyhydramnios, where basically it was like the baby was swimming around in my belly!
At this stage of the pregnancy, I was 35 weeks along, so they prepped me for a C-section, and at 3:16pm on Friday the 11th of September 2015, our beautiful baby girl was born, Dylan.
When she didn’t start crying, I was so scared that she wasn’t breathing! So they started breathing for her while she lay on a bed with lights and doctors all around her. Then from the operating room to the special care nursery, she was doing fine. And while I was in recovery, my partner brought me a photo of Dylan and I instantly fell in love with her! Once I was well enough to head back to the ward, they took me to see Dylan where they put her on my chest. She was so beautiful I just wanted to cry!
When Dylan was born, she was 6 pounds 1 ounce and 36cm long – most babies are around 50cm. And when I got up to check her out, you could tell she had something wrong with her legs.
I got out of hospital a few days later on Tuesday the 15th of September, and got a room at the Ronald McDonald house – what a great place! And on the Friday, Dylan got transferred back to Caboolture Hospital because she was doing a lot better. She stayed at Caboolture Hospital for about a week until she was feeding from bottles because she had only been tube-fed from birth in the 2 weeks she was in the RBH.
While she was Caboolture Hospital, we were meeting so many doctors and people wanting to take photos and what not of Dylan that it was hard to leave her at night. I would stay with her until I couldn’t keep my eyes open any longer! I just wanted to stay and cuddle with her and tell her that mummy was here!
First thing one morning when I got to the hospital to see Dylan, doctors told us that she has skeletal dysplasia, bilateral fibular hemimelia, hip dysplasia, proximal femoral focal deficiency and partial agenesis of the corpus callosum.
Within the first 8 months of Dylan’s life, we had found out all of this! Doctors from Lady Cilento Children’s Hospital (LCCH) have also sent off Dylan’s DNA overseas because they believe she may also have a condition called fuhrmann syndrome. There is however a minimum 3-month-wait before we get the results from the DNA sample that was sent off on the 5th of April 2016.
Dylan currently requires occupational therapy, sees a physical therapist, hand specialist, limb deficiency clinic, orthopedic specialist, pediatrician, ENT (ear, nose and throat) specialist, and she will need to start receiving speech therapy soon when she is 15-18 months old.
She will also need to get surgery on her hips in September 2016, but first she will be seeing a specialist from the USA, Dr. Paley, to see what options Dylan has. Dr. Paley is the Number 1 specialist on limb lengthening, so we are hopeful that he’ll be able to help, but each surgery that Dylan requires is going to cost about $200,000 – and she will need about 3-8 surgeries in her lifetime!
Either way, we have no idea what other treatments Dylan may need in her lifetime, but we have been told that she will either be in a wheelchair, or she’ll need to have prosthetics, or she’ll need the limb lengthening surgery in America which is going to give her the best outcome to have a more independent and fulfilling life.
In terms of the help we’re getting now for Dylan, we’re only getting some help from Montrose, who see Dylan every month for her occupational therapy and physical therapy. And because we have appointments almost every other week, it’s hard for me to get back into the workforce to try and help my partner make ends meet, who is currently working full time and overtime.
So please, we’re asking for your help! Anything you can give or any amount of money that you can donate for Dylan to help towards her future surgeries, treatments and appointments, we would greatly appreciate. Thank you.