Hypopituitarism/ SOD/ Develop. Delay

[amyt878]

Hi Everyone,

I thought I would share my story wth everyone.
I have kind of become anti social and want to try and re connect and let myself have therapy in writing my story.
I have a 4 yr old son named Hayden. I had my daughter in 2005. We named her Madison and this is our story...

I went into the hospital to be induced with my daughter in Sept 2005. After a pretty normal induction,she was born. Within a couple mins she stopped breathing. They resucitated her and took her to the Newborn Care Centre for observation. The next morning they did some tests and said she had Pulmonary Hypertension. They explained it was just her shunts in her lungs that needed to shut more and they would keep her under oxygen so that could happen. So, for the next 5 days we came in everyday and were unable to touch her as she was under lights.
We went home one day and were called and told she had had a seizure and stopped breathing. We rushed in and they put her into a more monitored care. The next day they did more tests and just could not figure out why she was deteriorating and her organs were failing and shutting down. After a long few days they were pretty sure it was related to her hormones and did a MRI to prove the theory. Basically she was born WITHOUT a pituitary gland at all!!! Its just a fluke one in 3 million type thing. We were told she would need replacements for life... ie Thyroxine, Hydrocortisone and Growth Hormone. She was finally released from hospital 3.5 months later.
It has been a long road of sickness, hospital visits and just a new appreciation for life.
We have also discovered she has Septo Optic Dysplasia (under developed eye nerves) and developmental delay. She is at about a 8 month level and she is nearly 2.
I have had to stop working and be at home as I just didnt trust her at a daycare since she has Cortisol issues. It is life threatening.
I know most people do not understand the lingo, but all parents with children who are disabled are a lot more similar then we think. We all feel the same feelings for our children and want the best for them.
The hardest part with Maddy is not knowing her potential in future and no one can tell us. The services provided are pretty limited and the waitl lists are pretty long. Its not a great system.
Look forward to talking to you all....:)

[kiwibird27]

I know exactly how you feel.....My daughter has a rare genetic disorder and has spent 6 months of her 1 year of life hospitalised, It changes your life, you become a walking paediatrician, I swear, I love her so much though and wouldn't change her for anything. Good luck with everything!!!

[amyt878]

Thank you, I love her more than anything and I just want the best for her...:)

[Jender]

Hi

I am not in your position (although my mother was with me when I was born - very different situation and not worth explaining here) but thought I would send you some :hugs:

And the only bit of advice I can give you - be informed, keep good records and do your own research.

Don't be passive with health professionals, be assertive without being aggressive. Don't demand you are right but disvuss your own thouhts. Use any time you get in front of such people productively.

Best of luck for you and your daughter - she is lucky to have you as a mummy:yes:

[emma19]

Hi
I can't believe this but my son has the same thing.
Even though he has the patuitary gland it is underdeveloped and does not work properly.
He has to take cortisone as well and he has the diabeties insipudus and has the ddavp.
They are checking for the growth hormone once he is over one.
He also has the vision impairment as well.
I would love to talk to you more about your experience as my sone is only 5 and a half months old and has spent a lot of time in the hospital due to all sorts of bugs so at the moment i can't really see the light at the end of the tunnel please add me to ya msn my name is emma and my addy is sweetestcandy777@hotmail.com . I hope to hear from u soon

[ReecesMum]

Hi there,

Just read your post and i have also experienced a similar story to yours so i do understand the lingo but i think the only thing different to my story was the hypopituitarism and the organs failing and maybe some of my experience can help you with questions you may want to ask your doctor(s).

I was also induced but my labour didn't progress so i went in for an emergency ceasarean and about 5 hours after birth he has seizures which made him he stop breathing.

Within the 3 weeks of hospitilisation doctors had told me that he has an absent septum pellucidum which in turn is the reason for his SOD(septo optic Dysplasia).He also suffers from severve brain damage from lack of blood and oxygen to the brain during labour which is the main cause of his severe development delays.His pituatry gland only produces average amounts of growth hormones and it also appears thin along with the corpus collosum on the Mri's.

At 17 months he does not walk,crawl,talk or do anything he is suppose to at his age other than laugh,giggle and babble.He has pretty much no expressive sense does not kiss or cuddle or show love.Doctors have classed him as cerebral palsy only due to the fact he cannot use his muscles to do what he is suppose to at his age

At the moment all growth factors are in the 3rd 4th percentile and his cognitive scale is at approx less than one month,receptive language is at approx 2-3 months,expressive language at approx 6 months and fine and gross motor is at approx 1-2 months of age.

I also do not know what lies in my sons future only time will tell.Below is my original post if you would like to check it out but written above may be some stuff that is new and missing from my original post.

http://www.bubhub.com.au/community/forums/showthread.php?t=97720&highlight=special

ReecesMum.