Baby with Alveolar growth abnormality and secondary Pulmonary hypertension

[carroa]

Hi, We have a 4 month old baby who has been in hospital since birth. She was born with an alveolar growth abnormality (diagnosed by a lung biopsy at Great Ormond Street) and sencondary pulmonary hypertension. We have been told that this is very rare, and are hoping that her lungs will grow and develop. Has anyone experienced anything like this?

[Hidden]

Hi i dont have experiance with kids with this condition and ny heart go's out to you.

Its not un commen babies lungs dont develope propper .. And like you say as thay devope i also hope things will inprove for you.

Heres link might find intresting and might be able to quote : atsjournals.org/doi/abs/10....

With my condition i have found medical experts are good but dont have scope or vision i.e new developments

Wishing you well cheers

[carroa in reply to Hidden]

Thank you for the link to the article, she is on Sildenafil for her pulmonary hypertension, the title seems to suggest that it can also help with growth which I haven't heard before. I hope so!

[Hidden in reply to carroa]

Hi carroa cheers did read that to .. Av my fingers crossed for you both

Looking at your other comments ad say am sure all is being done and like docs say is a waiting to see new bits develop as am sure thay are will

The human body is a robust thing that can adapt to most things thrown at us given the chance oppertunity.

A just wish i coild ad further or even had the answers ..

[Hidden]

Hallo there carroa,& welcome to the forum.Sorry I'm not an expert on what's happening with your darling baby daughter,but I'm sure someone will be of help to you.Have you been in touch with the BLF,I'm sure they would be a help to you?

I wish you all a good outcome,it must be so stressful for you all,love & gentle hugs to you all, xxx

[Suzy6]

Oh carroa I have no knowledge of this sorry. Great Ormond Street Hospital is one of the best. My granddaughter was born with many problems some we are overcoming some the battle is won some we may have to accept. Today she is off to Kings to have a camera inserted to look into her Lungs. She suffers with chest infections and severe Asthma. Ask as many questions as you can and if not happy seek another avenues. We are still fighting for her all the way. Good luck and take great care of your little one and yourselfxx

[carroa]

Thank you for your very kind words, I am new to this. Sorry to hear your granddaughter is having problems to Suzy6.

It has been a very traumatic time for us all, I had no problems with pregnancy or delivery and it wasn't until she was 4 hours old they realised that there was a problem. She was a term baby but we now know that her lungs are similar to that of a 28 week gestation.

Flibberti We have a healthy 3 year old boy which is very difficult and I constantly feel torn. We spent 3 weeks at GOSH, but back at our local hospital now. She has many desaturations episodes due to pulmonary hypertension and no 2 days are the same. She is on maximum medication for the PH and hoping that this will be controlled until new lung tissue will grow. Also hoping that the new lung tissue will develop normally. After 4 months we are still no closer to knowing if we will ever get our baby home.

If we do get her home it is likey that she will need long term NIPPV and oxygen. We just take each day at a time and live in hope. Xx

[Suzy6 in reply to carroa]

Stay in there and strong. We have been through all the emotions with our granddaughter, but she is a tonic so happy sweet and caring despite all her health issues.

[jenss]

Dear Carroa, I am so sorry to hear about your daugther's health problems. I cannot offer any advice, but want to give you my best wishes and I will have your precious darling in my prayers. Please do not give up hope. I wish you and your family all the best. Hugs and love to you allxxx.

[cofdrop-UK]

Dear carroa

A very warm welcome to you. I am so sorry to hear of your dear little daughter's health issues. Glad though she is being treated at GOSH.

Sorry I cannot help from an information point of view. You will I am sure find it helpful to 'phone BLF (can't find the number on this new site but perhaps someone will kindly put it up here for you). The nurses are very knowledgeable, helpful and supportive.

I am hoping for a steady improvement for your little one.

Please know we are all here to support you.

Love to you and your family.

cx

[onamission]

I have a five month old granddaughter I also have COPD stage 4 I can't even begin to imagine what your going through but we are always hear for you take care x

[amanda4081986]

Hello Carroa,

Our son also has alveolar growth abnormality. I tried replying before but I didn't see it post so I apologize if this is duplicate . I am desperate to speak with other parents in this position. Our son is 11 months now and still on o2. He is doing really well considering. I am having the hardest time connecting because this is SOOOO RARE ! I'd love to exchange contact info. I pray your little one is growing new tissue and overcoming all obstacles. god bless you and your sweet baby.

Amanda.