Adaś i Stefek

On 22nd July 2009 our twins: Adaś and Stefek were born by a caesarean section after 33 weeks’ gestation. Stefek weighted 2190g and Adaś 1970g.
Stefek had a cleft palate and cleft lip which were operated on 2nd April 2009 in Warsaw. He has been at home since he was 9 days . He is fed by the speciality Haberman’s bottle produced by Madel company for children with a cleft palate and cleft lip. After the surgery he needs  consultations with specialists such as: an ENT specialist, orthodontist, dentist, speech therapists, phoniatrist etc.
Adaś also had a cleft palate, cleft lip and oblique facial cleft, Goldenhar’s  syndrome: absent pinna and external earhole of the left ear, malformation of the right pinna, skin outgrowths on the face, absent eyelid of the left eye, corneal  ulcer of the left eye, outgrowth on the right eyeball, asymmetry of the brain hemispheres, VSD (ventricular septal defect – a hole in the heart),  mitral incompetence, curved backbone – scoliosis.
A bronchoscopy procedure has showed that he has got too narrow bronchi and functional abnormalities of the trachea. He has suffered from pneumonias several times and atelectasis for a long period of time.
All symptoms mentioned above result in swallowing problems, disorder of airway patency, blindness of the left eye, deafness of the left ear. Adaś has been fed by a gastric feeding tube from his birth. He still has got problems with swallowing. Now he can swallow about 30 ml in half an hour. He had a tracheostomy procedure done and was on a respirator for almost two months. Then he was oxygen-dependent.
Adaś left hospital for the first time when he was 45 days and was nearly a fortnight at home. On 18th September 2008 he was admitted to an intensive care unit in Krysiewicz’s Hospital in Poznań.  He had an apnea, hypoxia and another pneumonia. He was there till 4th February 2009.
On 4th February 2009 he was transported by an air rescue service to the Institute for Mother and Child in Warsaw where he was operated on 6th February. He had his soft, hard palate and lip repaired, patency of one nostril restored, undercutting of the frenulum and closure of the facial cleft. A week later, i.e. on 13th February, he came back to the intensive care unit in Krysiewicz’s Hospital in Poznań. He was checked out on 27th February 2009. He has been at home since then. Before his coming back home additional medical equipment such as an oxygen concentrator, nebulizer machine, sucker for sucking upper airways had had to be organized for him. Adaś has got a lot of discharge from a tracheostomy tube and very weak immunity. He has had bronchitis twice since he came back from hospital. Unfortunately, he is Pseudomonas colonized. He very often gets infections. His right bronchus has been confirmed to be too small. Consequently, this side of the airway runs the risk of getting infected very easily.
On 29th April a directoscopy examination was carried out to examine his trachea and possibilities of an intubation. The directoscopy  showed that the epiglottis placed on the right makes an intubation through the mouth difficult and can lead to hypoxia. In consequence, we must get used to the thought that Adaś is likely to have the tracheostomy tube for years L.
Adaś’s few-month stay at intensive care unit caused his physical retardation in comparison to his twin brother – Stefek who develops normally. Consequently, Adaś needs everyday rehabilitation.
A specialist hearing exam  (Ber’s exam) has proved that Adaś has got moderate hypoacusia. He hears maximum 50 decibels. When he is one year old we are to examine his hearing again. If his hearing isn’t better he will have to wear a hearing aid.

How can you help us?

Maybe someone could advice us how to teach Adaś to swallow. We don’t want to feed him by a feeding tube for years.

Maybe someone has got a child with Goldenhar’s syndrome and with similar symptoms and give us some advice on operations, rehabilitation etc.

Maybe someone knows what to do with his left eye and where and whom ask for help. Its cornea has been exposed to drying from birth. Because of the cleft eyelid his eye doesn’t close and the cornea is opaque. There is also the ulcer of the cornea. Every ophthalmologist, who has examined Adaś, doubts whether this eye will see. If the brain doesn’t send any impulses to the eye it’s apparently very difficult to restore it. Only the cornea is broken in this eye. The left eye is smaller than the right (so-called microphthalmia).

I worked full-time before our sons’ birth. Unfortunately, because of Adaś’s bad health I can’t go back to work. The only breadwinner in our family is my husband who is a mechanic.

As far as plastic surgeries are concerned plastic surgeons from Warsaw Institute for Mother and Child look after Adaś and Stefek.

The long way to normality is still before us. We don’t give up. We have got power thanks to other people’s goodness and kindness.

We ask all people of goodwill for financial help and support. We thank you for even very little money. I always repeat and I have experienced that when we show kindness to others our kindness returns to us.  My motto is:

Do good and throw it into depths of the sea. If people don’t appreciate your good deeds God will do it for sure!

We thank you for your help!

Beata i Rafał Rozwadowscy
Adaś, Stefek and Ania( born 27th June 2007)’s parents

e-mail: moraczbeata@poczta.onet.pl

Adaś and Stefek’s account

Adaś and Stefek have got their own sub-account in „Fundacja Zdążyć z Pomocą”(“Help in Time Foundation”). Everyone can pay money for treatment and rehabilitation on their sub-account.

Adaś still requires a lot of surgeries and everyday rehabilitation. Stefek requires many speech-therapy activities and other doctor consultations. Their treatment and rehabilitation is very expensive so we ask you for financial help.

We thank you very much for your help!

Fundacja Dzieciom „Zdążyć z Pomocą”
01-685 Warszawa, ul. Łomiańska 5
PKO SA I/O Warszawa

Foundation for Children “Help in Time”
5, Łomiańska St.
01-685 Warsaw, Poland
bank: PKO SA I/O Warszawa

http://www.fundacja.dzieciom.pl/7577

code SWIFT (BIC): PKOPPLPW

donations in US dollars
86 1240 1037 1787 0010 1740 2700

donations in Euros
31 1240 1037 1978 0010 1651 3186

with note:
Adam i Stefan Rozwadowscy – darowizna na leczenie i rehabilitację
with note:
Adam and Stefan Rozwadowscy – donation for treatment and rehabilitation