my daughter, fatemah

Asalaamu alaikum,
InshaAllah I want to share with you information about my daughters health so that if there are any of you going through the same thing, we can share our thoughts on it together.

Our daughter has what is called beckwith-wiedemann syndrome (bws). It is basically an enlargement syndrome so her inner organs a a little bigger than normal including her tongue which is called Macroglossia. In her case, though not many others, she requires a tracheostomy for breathing alhamdulillah. She also had an umbilical hernia and has a g-tube for feeding (the feeding tube is because of her macroglossia). Children with BWS are at an increased risk of developing cancer so she is screened for the every two or three months until she is eight years old, currently she is almost a year and a half.

She was born three months premature (weighing only one kilo) and because of this, sufferred a grade four IVH. An intraventricular hemorrhage, often abbreviated “IVH,” is a bleeding into the brain’s ventricular system, where the cerebrospinal fluid is produced.

Grades I and II are most common, and often there are no further complications. Grades III and IV are the most serious and may result in long-term brain injury to the infant. After a grade III or IV IVH, blood clots may form which can block the flow of cerebrospinal fluid, leading to increased fluid in the brain (hydrocephalus). She now has a VP shunt in her brain for this. Alhamdulillah, neurologically she is developing normally and has not had any problems since the bleed and resulting hydrocephalus.

From birth, she had been in hospital for seven months straight and we have had to go back several times since mashaAllah.

She is now due to go for tubes as she has full conductive hearing loss and a tongue reduction surgery inshaAllah so she can drink, breathe, and have continual normal development of her mouth and jaw.

InshaAllah if anyone has any son or daughter with these health issues or others, please, write me so we can talk inshaAllah.

update: As of (01/10/2011) she has had a tongue reduction, and tubes in her ears. Alhamdulillah she can now hear fairly adequately with her right ear but the left is still questionable. She has an appointment on 06/08/2011 to get her tracheotomy reversed inshaAllah. She was also recently diagnosed with hemihypertrophy on her right side (in large part because ofher becwith-weidemann syndrome) and diplegia cerebral palsy of her legs(as a result of her prematurity), alhamdulillah her brain is not affected by this. Also, since her tongue reduction, she has been wanting a lot more to drink by mouth instead of her feeding tube port mashaAllah. She is doing well otherwise and is soo curious these days, just like any other little girl alhamdulillah.

update (05/21/2011): As of May 19, 2011, and her MRI’s, Fatemah was found to have hepatoblastoma on her liver (thought to be due to her beckwith-weidemaan syndrome) and a cyst pressing against her brain stem (cause unknown alhamdulillah). Allah only gives us what is khair, so here we are now, as I type this, in the hospital in London for the next 9 days where she will undergo a liver resection with possible chemo after, and brain surgery to reduce the cyst inshaAllah. Please keep her in your dua’as… jazakAllah khair.

 

update (06/30/2011): Alhamdulillah our daughter has had her surgeries, 06/03/2011 and 06/05/2011. They also put a central line in her chest for blood draws as it is hard to find veins on her alhamdulillah. The tumour turned out to be malignant (cancerous), though not a hepatoblastoma as we originally thought but a more rare type of tumor subhanAllah. Alhamdulillah they were able to take the whole mass out along with the right lobe of her liver and her gallbladder, and we think she will not need chemotherapy, insha’Allah. She just has to be followed by oncology to be sure that there is no recurrence inshaAllah. The cyst on her brain was drained and alhamdulillah she is now off oxygen at night. Allah subhana wa t’ala is al-shafi, the one who holds the cure. We should be going to back to hospital before ramadhan inshaAllah so she can get a portacath or broviac for blood draws which is a permanent line that would sit under her skin so the doctors wouldnt have to continually miss veins when they try to draw blood (they would draw it straight from the line instead of say, her hand, or wrist). She is going to be needing oncology follow up with blood tests until she is around 7 alhamdulillah, so this will ease things for her.

update (09/01/2011): Our daughter went to the hospital yesterday where her doctor removed her feeding tube permanently alhamdulillah. She has vomited since, though they think it is a coincidence and not an implication of the feeding tube removal alhamdulillah. This means we are 50% finished tube wise. One out, and one to go inshaAllah.. please keep her in your duaa, jazakAllah khair.

update (15/10/2011): We just had a repeat hearing test for dd. Her one side was mild hearing loss, her other was severe hearing loss. She had a mild ear infection at the time though so they are not sure how big a part that played, how much it influenced the test. She needs to go for a repeat one next time she is there but in the meantime, we are talking about hearing aids and implants so we will see how it goes. In other news, alhamdulillah, she has began taking assisted steps. If she would take the steps in her walker so would go faster, but she is so wants her independance and refuses to use it subhanAllah. InshaAllah she will get the hang of it soon. Also, she has to go see Dr.Moussa for a visual evoked potential test where they will put electrodes on her head and see how she responds to certain stimuli. Depending on the results, her optomistrist said it may be time for eye surgery. We have to go see her opthamologist Dr.Hawkeswood first though. He mentioned once before that there was a 20% chance that this problem can be fixed with over-corrective lenses inshaAllah. Allah give her shiffyah.

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18 responses to “my daughter, fatemah

  1. UmmSakina

    As Salaamu Alaikum Sister;

    May Allah SWT bless you and your family with health and happiness in this life and the next. Ameen.

    I just found your lovely blog via the “Quran Memorization” post Alhamdulillah.

    My son has Down Syndrome which isn’t the same as BWS, but I am familliar with going through the pain of seeing your child endure illnesses and surgeries. He just turned 12 and is big and healthy MashaAllah. May Allah SWT grant you patience during this difficult time and make things easier for all of you in the near future.

    Wa Salaam 🙂

  2. May Allah bless you and your family uhkti, thankyou so much for replying. I just saw your comment, it was emailed to my inbox. We are currently in the hospital in London, well, at the hotel now alhamdulillah. Fatemah has two surgeries coming up this week. A liver resection and brain surgery to reduce a cyst on her brainstem mashaAllah. Allah gives only what is khair to us though, so inshaAllah, she will make it through fine, like she has with all the other surgeries she’s had. InshaAllah your son is well, I hope you come back often, I havent had a chance to post recently, but I hope to update in the near future.

    Wa Salaam

  3. salam aleikoum sister, and thank you so muh for your comment. I pray that Allah may make things easy and good for you and that you grow with a strong Iman out of all of that! I would love to stay in contact about the hearing impairment of our daughters

  4. As salaamu alaikum Dearest Ukhti,

    May Allah make things easy for you and your family, Ameen. All the best, InshaALLAH.

    Wa salaam

  5. Habeebah Muhammad

    As Salaamu Alaikum, Sister. May Allah (swa) keep you strong. May Allah (swa) Make it easy for your baby girl, you and your family. Continue to be patient and faithful–Allah does not put a burden on us that we cannot bear–after difficulty there is ease. I will make dua for you and your family.

    • JazakAllah khair uhkti Habeebah, wallah I thank Allah swt every day, I have seen other little girls far worse off health wise than my own daughter, Allah swt surely does not give us more than we can handle. Eid Mubarak habibti to you and your family.

  6. bint ahmed

    Aslmalyk ukhti…may Allah swt cure Fatemah…may Allah swt reward you with Jannatul Firdous…may Allah swt give Fatema such a shifaa that no traces of the sickness remain…may Allah swt make Fatema a means of taking the deen to the 4 corners of the world…I hope to meet you both one day bi_ithnilaah…

    • walaikum salaam, ameen to your dua sister, jazak Allah khair… i just got home from hospital myself, I had been admitted for two days subhanAllah. I made dua for you, as I once hear that a sick persons dua is always accepted, inshaAllah. I hope you and your family are well and inshaAllah, we will see each other one day, if not in dunya, in Jannah bi’thin’aAllah ❤

  7. CountryGirl

    Thank you for sharing about your daughter. It is so clear how much you love her. I have a daughter who is two and a half and i remember when she was learning to walk and talk and It is such a sweet age. I have never had to walk in your shoes with a hurting child, yet I can imagine the tears and prayers you must have daily. Your attitude is so nice to see. You are struggling yet you do not let the struggles keep you from doing good and showing care to other hurting people. I don’t see that much today. I am not a muslim, but with the help of God’s Spirit, I walk with him daily and strive to follow His commands; to love Him and to love others. Sadly, I tend to fail more than I succeed, but His mercy is endless, it is new every morning. I have confidence that the blood of His son, Jesus, covers my errors, and makes me acceptable to Him. I will pray for your little girl, and for your family. Jesus who healed the sick, and gave sight to the blind, and raised the dead, can help your little girl and your family as well. I do not mean to be preachy or sound like I am trying to convert you. Your faith gives me courage when all around me I see “Christians”‘ who do not live by the light they have, nor the gifts that have been given to them. I pray that your faith will be strengthened as you seek God. Just know that I am praying for a miracle for your little girl, and for blessings as you seek to help your Yemeni sisters. It cheers my heart.
    Anna

    • Thankyou for your comment on my blog… I have faith as a muslim that it is just a test from God (swt) as God sends tests to those he loves. He does not give us more than we can handle, this I believe :). My daughter has touched the hearts of so many people, with everything she has went through, she keeps on smiling through it all subhanAllah. Before I was Muslim, I grew up Ukrainian Catholic, and I found my way on what I see as the true and straight path of Islam. I do believe in Jesus (peace and blessings be upon him) as being one of the Prophets of God (Allah). There is only one God though, and He alone can grant my daughter shiffah (heal her). Thank you for the well wishes for my daughter…

  8. Nazira

    As Salaamu AlaikumWa Rahamtullahi Wa Baraktuh,
    Dear Sister,
    May Allah Azza Wa Jall keep you strong. May He make it easy for you and your family and especially your baby daughter, Insha’Allah….Aameen.
    May He grant you and your family the Patience to continue, Aameen.
    Please remember that Allah Azza Wa Jall tells us in Al Qur’an that the stronger our faith is the stronger our test…Allah ho alam.
    My duahs would be with you and your family , Insha’Allah.
    Fi amanillah
    Umm Mas’ud

  9. Noor

    AA

    Sister I just saw this now…I’m not sure the progress she has made since the last post. I am making dua for you. May Allah SWA ease your burden, give you reward and give her shifa and a good quality of life. Ameen

    • Ameen to your dua,Allah make it easy for all of us, no matter what tests He gives us. I will post an update soon uhkti inshaAllah! 🙂

  10. Assalaam Alaikum Wa Rahmatullahi Wa Barakatuhu Sister ,

    Jazaki Allahu Khayran for sharing yours, your family’s and Fatemah’s strength and patient. I ask Allah the Lord of the Throne to cure her, and to grant you and your family the highest rank in Jannat Al Firdaws. Indeed after difficulty comes ease, and Allah knows us so well –more than we can ever know ourselves–and He does not give us except that which we can bear and in the end it is absolutely for our own good. Alhamdullilah Rab Al Alameen.

    Lamya

  11. umm

    Assalam Alaikum wa rahmatullahi wa barakatuh…how are you sis and yr children and yr daughter fatemah..أسال الله العظيم رب العرش العظيم أن يشفيهاMay Allah swt reward you parents immensely for ur patience..and may Allah swt grant a miraculous cure..و من يتوكل على الله فهو حسبه….Dua is the best cure.Came to yr blog googling for Hifdh tips..Jazakillahu’ khairan katheeran for yr efforts..

  12. Salams sister

    I found you whilst doing some research on tracheostomy. I pray your daughteris doing well InshaAllah. I am not sure how often you check this but I hope you find it in good health InshaAllah. My son has a congenital heart condition and has three heart surgeries and now has a tracheostomy as well as a feeding tube. Alhamdulilah. He is 5months now MashaAllah. I beleive my boy is dearly loved by Allah swt and He The Great, The Most Merciful has chosen us for this great test. We sadly lost our daughter last year prematurely so the sadness and pain has been immense and the test is huge but Allah has given a strong beautiful boy Alhamdulilah who fights through everything and keeps his mummy strong MashaAllah. It would be lovely to talk to you as I do not know any other Muslim with a child with a tracheostomy Subhan Allah.

  13. Salams sister

    I found you whilst doing some research on tracheostomy. I pray your daughteris doing well InshaAllah. I am not sure how often you check this but I hope you find it in good health InshaAllah. My son has a congenital heart condition and has three heart surgeries and now has a tracheostomy as well as a feeding tube. Alhamdulilah. He is 5months now MashaAllah. I beleive my boy is dearly loved by Allah swt and He The Great, The Most Merciful has chosen us for this great test. We sadly lost our daughter last year prematurely so the sadness and pain has been immense and the test is huge but Allah has given a strong beautiful boy Alhamdulilah who fights through everything and keeps his mummy strong MashaAllah. It would be lovely to talk to you as I do not know any other Muslim with a child with a tracheostomy Subhan Allah.

    • salaam alaikum sister, i dont know of any other sister with a child who has a trach alhamdulillah so it was wonderful of you to reach out. InshaAllah email me privately if you like at yyvabdulrahman@gmail.com

      Allah make it easy for your son and your family and make him the coolness of your eyes and bless him with health and emaan. xoxo

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