Taylin Mackay SMA 1

Taylin Mackay

Taylin Mackay

 

4th September 2007- 20th January 2008
In honour of our beautiful Angel.
By Mum (Lee Mackay)

 

Our second beautiful baby girl, Taylin Amily was born by elective caesarean at 9.06am on 4th September 2007 at Traralgon hospital. From the moment that her dad, Jase, cut Taylin’s cord, there was a strong bond between father and daughter. We always felt that Taylin was different, like an angel, that extra something special as we got to know her. Taylin’s big sister Kyla, 4, was so excited to have a little sister and wanted to hold her all of the time.

 

Taylin was perfect during the first 10 weeks of her life. She slept, drank, was very content, strong and held her head up better than Kyla did at that age. Taylin loved going for walks in the pram, looking at her bird’s mobile, loved bath time and always smiled and talked to us. She mesmerized us all and everyone she came into contact with by looking right through you and scanning your whole face with her big blue eyes and Mohawk hair!

 

Taylin developed a bit of a cough at 10 and a half weeks and we thought it was just the cold most babies get at that age developing their immune system. A couple of days later I took her to the doctors who suggested I take her to casualty to get it checked just in case.

 

We were admitted to a ward and Taylin was diagnosed with bronculitis. We felt confident that she will be home after one or two nights. The next day Taylin developed Pneumonia. She became very sick, very quick and the doctor’s could not understand why. It was 6 hours of touch and go before she was stable enough to fly out with the Nets team to the Royal Children’s Hospital in Melbourne. Tay spent 8 days on life support in ICU and 4 days in the ward then she was able to come home. How happy we were to be taking our baby girl home well.

 

After a few days of being home, we became very concerned of Taylin’s muscle weakness and that she was so floppy from having the Pneumonia. We continued with her physiotherapy and hoped that she would get stronger with time.

 

I “Googled” “Muscle weakness in babies” and it came up with Spinal Muscular Atrophy. (SMA). I went numb as I read the symptoms, floppy limbs, more in the legs, difficulty sucking and swallowing, and prone to respiratory infections. I went to bed frozen that night and said to Jase (My husband), “Taylin has SMA. I just know it, she has every symptom”. He said not to be silly and I called the doctor at RCH the next morning, he said “Lee if she had SMA she wouldn’t have been strong enough to go home and get better, you would know it if she had SMA, it is horrific”.

 

We tried to think positive and enjoy our life but couldn’t help thinking they were missing something, she was very weak and we couldn’t get it off our minds.

 

Taylin got bronculitis again after being home 2 weeks and an X-ray showed it was not pneumonia so we were confident she would fight it on her own. We were nervous. Every bottle she had as she was finding it hard to drink, every bath we were watching to see if she was moving her legs.

 

We had a lovely Christmas day and she got worse after the New Year. We took her back to get another X-ray and this time it was pneumonia again. We were flown out again to Monash Clayton. The Doctor at Monash was more concerned about Taylin’s floppiness and so were we, both asking each other many questions about it all. He was concerned that it could be her muscle weakness causing the pneumonia and not the other way around.

 

The next day a Neurologist looked at Taylin and said that he was very worried about her and they were doing tests. We asked them were they testing her for SMA and they said clinically she could have SMA but needed to confirm it with a blood test because they could be wrong. The next week was a gruelling wait. We did lots of research on SMA and read stories and knew that Taylin was at the later stages of it as she had repetitive pneumonia. Taylin had developed more of the symptoms, including, clenched fists, rolled arms, concave (sunken in) chest, constipation, weak cough, the list goes on, she was a text book case of SMA type 1. Type 1 being the most severe and the shortest life span Tay had symptoms before 6 months of age. Babies rarely live past 8 months without life support. SMA is the biggest genetic killer in infants and there is no cure.
It was the most emotional time of our life ever. We had counselling and realised that we have been grieving the loss of illness for Taylin since November. We couldn’t eat or sleep and couldn’t stand up for long. The thoughts running through our heads were that our baby girl is not going to grow up with her big sister. How do we tell Kyla she does not have a little sister anymore? Our Taylin will never experience being able to eat, walk, talk all of the things most people take for granted. The anger that we were pushed into a corner and for once in our life we could not control what was happening at all. Jase could not be the protector of his daughter; I could not be the organiser of getting Taylin better. We just felt like our hands were tied behind our backs and someone was stabbing us in the heart with a knife. At the same time we also felt a slight bit of relief that we are now getting answers to the questions we have been so on edge about for so long. Our worst nightmare was becoming a living reality. You never think that your kids will go before you, but we had to accept that Taylin may.
We had to come to the conclusion and both agreed that Taylin was not right and not well and we had to set her free then we were happy that we had the power to be able to help her with that. To not let her suffer as much as possible was our only wish.
Taylin was diagnosed with SMA on the 14th of January 07. We had a very strong feeling and knew we were right, instinct is rarely wrong.
Without a doubt we decided to continue to give Taylin the best life we could and had her transferred back to the Traralgon hospital where we spent every last minute with her. We decided not to intervene and treat her, just let nature take its cause which was what was best for her, not having her go on and on for our benefit. The antibiotics were causing dirareah and the suctioning causing bleeding and stress to Taylin so that was all stopped. We did keep the oxygen on and fed her through a nasal gastric tube to keep her comfortable. She was getting worse with Infection so we decided to use palliative care and make her as comfortable as we could.

The day before Taylin passed; she grabbed at her dummy, and took it out of her mouth, looked at it and smiled then put it back in. This was a big achievement and a milestone for her, one of which we are very proud. Taylin smiled and talked to everyone right up to the night before she passed and would laugh when we sang “If you’re happy and you know it clap your hands”. And clap her hands together. She loved us moving her legs as she couldn’t herself.

 

An hour before Taylin died, we took off the oxygen and nasal gastric tube, washed her face and cuddled and kissed her. He sister loved seeing her with her normal face and told her that she would always miss her and love her forever.

 

Taylin took her last breath and left this world on Sunday the 20th January cradled in Jase’s arms, with me cuddling them both. Jase wanted to do this for Tay, his beautiful baby girl, to send her off to the angels from the comfort and security of his arms. His arms were the first to hold her as she entered this world, and the last to hold her as she was taken away by the angels and lay there looking like a beautiful porcelain doll at peace.

 

Taylin had a beautiful heart, mind and soul, encompassed by a body that couldn’t support her. Always committed to what was best for her, we had the keys to set her free, and did so selflessly. Her life on earth protected by our love, it is a relief that she will suffer no more.

 

We were so lucky to have such fantastic family support, we could not have done it without them, they were there for us every minute, as were our special friends.

 

We had a lovely private family funeral where we all sang “If you’re happy and you know it clap your hands”. Kyla especially liked this. We let 4 pink balloons go in Taylin’s honour and 2 eagles appeared and flew with them all the way. We have since learned that the presence of an eagle has been associated with the belief in renewal or rebirth and the departure of the soul to live among the gods. We celebrated her life all day and night with family and friends.

 

Taylin came to me in my dream after she passed and said “I am ok Mummy, I am alright” and that is what keeps me going. Knowing our baby is flying with the angels and she was only sent here for a short but beautiful life and she knew that is comforting. We all fell in love with her and she fell in love with us. She has taught us more than anything or anyone ever could, and given us a very important message that we are carriers of SMA. We have had genetic counselling and our wider family need to be tested if wanting to have a baby. Taylin saved us all of having to go through that pain again. If she had of gone that horrible day in November at Traralgon we would never had known she had SMA. Taylin has leaded us to her being tested and died 6 short days after being diagnosed.

Not even 2 weeks on and we have already decided that we would love to try to have more children. We will do it in Taylin’s honour and have her strength to do it. It is what she would have wanted, for us to complete our family. We are lucky now that we can be tested via CVS at 8 weeks or even use IVF Pre Genetic Diagnosis as an option. 1 in 40 people are carriers of SMA and Jase and I both have to be to have passed it on. We have a 1 in 4 or 25% chance of it happening in every pregnancy but Kyla is living proof that we can have healthy children easily and naturally.
Angel means “messenger” and Taylin certainly was. We feel blessed to have known her, met her and loved her for the most amazing four and a half months of our life. We feel strong that we now have our own personal guardian angel looking over us. We miss Taylin so bad already, our house feels so empty but we feel that it is better to have loved and lost than not loved at all.

 

“Those we love don’t go away; they walk beside us every day.”

“Fly freely sweetheart, you will be with us forever”

Love Mum, Dad and Kyla xxx

Five months after Taylin passing and writing her story for the Website,
I wanted to add to it.

 

When Taylin was being diagnosed with and we were researching SMA and reading other babies stories on the SMAAA Website, all I wanted to read was that people eventually went on and had more Children. Although those families’ lost babies will never be replaced, nor were the pain and grieving for them any less, they were strong enough and able to have more children, to complete their families.

Well I can now say that we are lucky enough to have come that far. We are having another baby. We were told that there were no rules; no time frame after loosing your child was ‘right’ to try again but it probably wouldn’t happen as we were grieving for Taylin so bad. Well, the first month we even thought about trying, it happened, we were blessed to be pregnant again.

 

We felt mixed emotions, nervous about the CVS test, nervous if we had to terminate, excited that this baby may not have SMA and had a good 75% chance, that this was gift from Taylin, our little angel in heaven. We knew it is what she would have wanted for us. The next 12 weeks were hard.

 

The CVS test at almost 12 weeks was not nice, not painful, a bit uncomfortable and more of a mental pain to think what is happening. The thought that the CVS test has a one in 100 chance of miss carriage was scary, it made me sit on the couch and do nothing for 2 weeks.

 

The two week wait was hard; I was starting to show and was so nervous and anxious.

 

The call from our lovely Genetic Counselor to confirm that our baby was not affected with SMA was worth it all, I would do it 10 times over if I had to get our family (Don’t know about 10 kids, but you would do anything to have your family complete). The whole time I had Taylin’s strength with me, thinking if she could do what she could do, I could do anything! I had a feeling that the baby would be ok, I knew we would have another baby in our arms, and our only wish was to have another baby by Christmas for Kyla.

Another surprise the next day was to confirm that the Chromosome tests were ok, so all major chromosome abnormalities, such as Down Syndrome, were ruled out. The test also showed our baby was a boy, as they count the chromosomes and it is 100% accurate. This was amazing, we never thought we would have a son but things happen for a reason.

 

What a relief to be able to tell Kyla that she would soon have a baby brother, all she wanted to know was could she feed him a bottle. We have so much to look forward to and thank our little Angel Taylin for letting us know to be tested. Taylin will always be in our family, just in a different way. It’s funny we seen a Clairvoyant who said that Taylin knew she was only here for a short life and she chose us to be her parents and to give us a message to save generations of our family having to go through what we did. That we agreed on this in our past human life to sacrifice a child so that our children wouldn’t have to, (which I would do that for my kids). She also said we would have a healthy baby boy and I would be pregnant by September! Amazing!

 

I just hope that this helps other families know that although SMA is horrific and so sad, it is possible to have a smile on your face again, to have something to look forward to and to have other healthy children.